MSSANT Network Winter 15 WEB NEW 220615

network
The Official Magazine of the MS Society of SA & NT | ms.asn.au
Happy moviegoers at the MSchievous Bunch film fundraiser.
Winter 2015
Protect yourself from the flu
Cruising with Stephen
Living a meaningful life with MS
Physiotherapy classes restart in SA

Inside | Winter 2015
The Multiple Sclerosis
Society of SA & NT (Inc.)
Telephone (08) 7002 6500
Fax (08) 7002 6599
MS Assist 1800 812 311
Letter from the Editor 3
From the desk of the CEO 4
A message from the General Manager – Client Services 5
Round-up of research and other items of interest 6-7
Client Services
Directory
GENERAL MANAGER – CLIENT SERVICES
Sue Shapland (08) 9365 4840
MAWSON LAKES – HEAD OFFICE
Endeavour House – Technology Park
Module 6E,
11-15 Fourth Avenue (08) 7002 6500
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
WOODVILLE
51 Woodville Road (08) 8345 8700
Protect yourself from the flu 8
The invisibility of loss 9
Multiple Solutions 10
Disclosure – to tell or not to tell? 11
Cruising with Stephen 12
Information Sessions 2015 13
Living a meaningful life with multiple sclerosis 14
Friends 15
Peer Support 16-17
Physiotherapy classes restart in SA 18
Motomed Exercise machine in Darwin 19
NT Carers Australia 19
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.
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.
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.
2
Winter 2015 The MS Society of South Australia & Northern Territory

Letter from the Editor
Bhavna Jagtiani, Guest Editor
It is a great privilege to be sitting in the Editor’s chair for
this edition of the Network. When thinking about what I
should say, I asked myself what I enjoy most about working
on each edition.
As you may or may not know, the process of bringing the
magazine to life starts about two months before it reaches
your letter box. It begins with a big call out asking for entries
from the MS community in SA & NT. The response is always
excellent and then begins the process of sifting through the
content so that only the best and most relevant information
reaches you. Finally, the design process starts before the
satisfying conclusion of holding the finished magazine in my
hands. While this whole process in itself is rewarding, it isn’t
what I enjoy the most about working on Network.
I have to say, what I enjoy most is seeing the passion all the
contributors to the magazine have for people living with MS
in SA & NT. Each and every person who submits an article
to Network truly cares about you – our readers - and it is
extremely heart-warming to see.
From the regular Round-up of research column on page 6 to
personal stories such as Cruising with Stephen on page 12,
every article comes from a place of wanting to improve the
lives of those living with MS.
There are many articles of interest in this edition. If you find
yourself wanting to head off on a cruise like Stephen, note
down the dates for our travel forum in your diary. The forum
will offer tips on making travel comfortable and easy among
other things.
Also in this edition, we are pleased to announce the
re-commencement of physiotherapy classes in SA. Read
all about it on page 18. Finally, don’t miss a very poignant
piece on the importance of grieving on page 9. It will make
you re-think your definition of loss and remind you of the
importance of acknowledging your feelings.
As you flip through this edition, I hope you enjoy the
read, and know that we are continually striving to bring
a better Network to you.
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.
The MS Society of South Australia & Northern Territory Winter 2015 3

From the desk of the CEO
Marcus Stafford
On 27 May, we celebrated World MS Day.
It’s a big day, with the dominant objective focused on
reminding the general population that people with MS
are part of our community. Sometimes their disabilities
are clear to see; sometimes people are fighting their own
hidden battles. Everyone has a unique and personal journey.
On this day, the MS community comes together to share
stories, raise awareness and crusade with, and for
everyone affected by MS.
As a consequence we have adopted the theme ‘Stand Up
to MS’. It is a theme that champions empowerment and
creates a spirit that is relevant for all. The message is
simple. Perhaps you are a nineteen year old young woman,
diagnosed yesterday. Or perhaps you were diagnosed forty
years ago and now find yourself in a wheelchair. Or perhaps
you are a busy able-bodied worker doing the Adelaide
commute every day. Without boundaries and without
temerity, let’s Stand Up to MS.
The action comes in many forms and is spread evenly
between the provision of healthcare services to build today’s
quality of life and the commitment to research to create a
future world free from MS.
We are very proud to say that the MS community in South
Australia rallied behind us and we were able to pull off a
successful campaign.
You may have seen us out and about during the week of
World MS Day. We held a street appeal at Adelaide Central
Market and on Rundle Street, shaking tins, handing out
Stand Up to MS stickers, and chatting to anyone who
wanted to listen!
The Multiple Solutions team also joined in on fundraising
efforts with their own street appeal. It was lovely to see the
team get behind our campaign and we thank them for their
continuous support.
It was a great day for all and the positive feedback we
received made it all worthwhile. All money raised through
the campaign will support people living with MS in SA
and NT.
We are working hard to rebuild and expand our services
to our Clients. Already we have been able to re-establish a
number of services through our events and crowdfunding
campaigns. But this can’t be done without ongoing support.
Next year, we hope to expand our activities around SA and
NT and make World MS Day a stand-out event. So – don’t
be shy! If you’d like to get involved, please let us know. The
more the merrier; the bigger the better!
Let’s Stand Up to MS.
4
Winter 2015 The MS Society of South Australia & Northern Territory

A message from the General Manager
– Client Services Sue Shapland
“Those who can adapt to change are
those who will continue to grow,”
Justin Ramalho
Well never a truer word spoken and very pertinent at this
time! Change is the one constant and we are experiencing
ongoing change across the board currently.
In the MS world there are three new therapies available
and additional international research efforts focusing on
progressive MS.
Of course the biggest and most significant changes that will
come about will relate to the evaluation of the various NDIS
trial sites and how the model will look and be rolled out.
However the scheme ultimately looks, the outcomes for
people who do, or may need a wide range of supports or
equipment will be so much better under these changes.
Already in WA we are seeing some of our Members within
both of the trial sites accessing their new individual funding
plans to their benefit.
We are looking forward to plotting our new directions for
MSSANT; expanding our capacity to support people living
with MS. We will keep you posted with information and
updates as they come to hand.
I would like to thank everyone who took the time to provide
us with their feedback through our first annual Client
Services Survey. We are currently finalising the results and
will be happy to share these with you in the next Network.
Don’t forget flu season is on the way. Have you had your flu
jab? We have added some tips on trying to avoid the flu in
this edition.
Please remember the Client Services team, including
Amy on our MS Assist line, are here to provide you with
quality information about all aspects of MS, treatments,
research and support.
Secondary Progressive
MS Study
• Are you aged 18 – 65 years?
• Have you been diagnosed with
Secondary Progressive Multiple Sclerosis (SPMS)?
• Are you interested in a study investigating
the efficacy of a new medication for SPMS?
If you’ve said yes to any of the above,
then you may be eligible to participate.
For further information please call PARC on 8222 2712
This study has been approved by
the Royal Adelaide Hospital Human
Research Ethics Committee
The MS Society of South Australia & Northern Territory Winter 2015 5

Round-up of research
and other items of interest
Sue Shapland RN, BN
Here we bring you research summaries sourced from
various web sites around the world.
PrevANZ Update
PrevANZ is a world-first clinical
trial that will test whether oral
vitamin D supplementation can
prevent MS in those at risk of
developing the condition.
Funded by MS Research
Australia, combined with
significant funding by MSWA,
this clinical trial will focus on the possibility of
using oral vitamin D supplementation to prevent a diagnosis
of MS following a person’s presentation with a first ‘attack’
suggestive of MS.
There are currently over 60 people enrolled, but the target
is 240 people with Clinically Isolate Syndrome from around
Australia and New Zealand. The trial will take a total of four
years to complete, with results expected in 2017.
Read more on the MS Research Australia website at
msra.org.au/prevanz
Anti-LINGO
Experimental drug
found to repair
nerve damage
A Phase-2 study of
experimental antibody
anti-LINGO-1 has been found
to repair nerve damage in
people suffering from MS.
The drug was tested on 82 people suffering from acute optic
neuritis, a condition that is characterised by loss of myelin
within the optic nerve. It is thought that half of all people with
optic neuritis will go on to develop MS. Participants were
treated with high dose steroids and half were then chosen
to receive anti-LINGO-1. Participants were assessed every
four weeks for six months. Findings showed that 53% of the
people who were given the drug had recovered to normal or
nearly normal. Source: International Business Times.
Researchers identify new potential
genetic risk factor for relapsing-remitting
MS in women
Although MS is not strictly hereditary (directly transmitted
from parent to child), the risk of developing MS is higher
among siblings or children of a person with MS compared
to the general population. This inheritance pattern suggests
that genetic factors play a role in determining MS risk.
A study published by Dr. Anne Boullerne, Douglas
Feinstein and colleagues in the journal American Society of
Neurochemistry (ASN) Neuro has identified a new genetic
risk factor for the development of MS.
The authors identified a genetic variation in a family in which
five siblings, but neither parent, were either diagnosed
with or suspected of having MS called a single-nucleotide
polymorphism (SNP) in a gene called STK11. This has
traditionally been associated with tumour suppression,
but has also been shown to play a role in the regulation of
immune cells and the formation of myelin around nerves.
The researchers then determined whether this genetic
variation in the STK11 gene is linked to the risk of MS in a
genetic population study.
DNA samples from over 1,400 individuals were screened
– 654 with relapsing-remitting MS, 100 with primary
progressive MS, and 661 healthy controls – to determine if
this genetic variation is more common in individuals with MS
compared to those without the disease.
The findings from this study have placed the STK11 genetic
variation as one of the strongest reported genetic risk
factors for the development of relapsing-remitting MS in
women, while opening up the possibility of targeting cells
harbouring this variation with drug therapies.
Reported by the MS Society of Canada.
6
Winter 2015 The MS Society of South Australia & Northern Territory

High doses of biotin in
chronic progressive
multiple sclerosis:
A pilot study
This pilot study aims to assess
clinical efficacy and safety of
high doses of biotin in patients
with progressive MS. The
preliminary data suggests that high doses of biotin might
have an impact on disability and progression in progressive
MS. Two double-blind placebo-controlled trials are ongoing.
Source: msard-journal.com
Comment: Biotin is a B-complex vitamin also known as
vitamin H and is found in small amounts in numerous foods
including egg yolks, nuts, berries and cauliflower. Find out
more about biotin rich foods at bodyandsoul.com.au.
Fatigue, Sleep Quality,
and Disability in
Relation to Quality
of Life in Multiple
Sclerosis
Fatemeh Moghaddam Tabrizi,
PhD; Moloud Radfar, PhD
From the Nursing and Midwifery Department, Reproductive
Health Research Center, Urmia University of Medical
Sciences, Urmia, Iran.
Quality of life (QOL) is impaired for people living with MS in
part due to physical disability. MS-associated fatigue (MSF)
and poor sleep are common and treatable features of MS
which affect QOL.
The study, with 217 participants, sought to assess the
association between fatigue, sleep quality and quality of
life in people with MS. The researchers observed strong
correlations between QOL, fatigue, and sleep quality in the
participants. The findings support routine screening and
monitoring of fatigue severity and sleep quality and their
effects on QOL.
Understanding Drivers of Employment
Changes in a Multiple Sclerosis Population
Karin S. Coyne, PhD, MPH; Audra N. Boscoe, PhD; Brooke M.
Currie, MPH; Amanda S. Landrian, BSTodd L. Wandstrat, BS
Pharm, RPh, PharmD.
This study aimed to increase understanding of the key
symptoms and factors leading MS patients to leave work or
reduce employment.
Twenty-seven MS patients who reported leaving the
workforce, reducing working hours, or changing jobs
due to MS within the past six months, were recruited
from four clinical sites in the US. Patients participated in
semi-structured interviews to discuss MS symptoms and
reasons for changing employment status.
Physical symptoms (e.g. fatigue, visual deficits) were the
most common reasons (77.8%) for employment change, and
40.7% of patients reported at least one cognitive symptom
(e.g. memory loss). Fatigue was the most pervasive
symptom, affecting both physical and mental aspects of
patients’ jobs.
Fatigue was the most common symptom associated with
decisions to leave or reduce employment and can lead
to a worsening of other MS symptoms. Comprehensive
symptom management, especially fatigue management, may
potentially help patients preserve their employment status.
The MS Society of South Australia & Northern Territory Winter 2015 7

Protect yourself
from the flu
A yearly flu vaccination for everyone six months and older
is recommended as the first step in protecting yourself
against the flu. It reduces the chances of contracting and
transmitting the flu. This is especially important for people
particularly at risk of complications arising from influenza,
and those in close contact with at-risk people.
Influenza is highly contagious and spread by an infected
person coughing or sneezing virus droplets into the air.
Others then breathe them in and become infected. It’s
important to remember that touching contaminated surfaces
(including hands) and then touching your mouth, nose or
eyes can also lead to infection.
You can minimise the spread of the virus during flu season
by practicing good household and personal hygiene, avoiding
close contact with others if you or they are ill, and covering
your mouth and nose when coughing or sneezing.
The bad news:
• Influenza viruses can survive for an hour or more in
enclosed environments. This means contaminated
respiratory secretions can be picked up even without
someone coughing or sneezing near us.
• Even before we display symptoms, we can be shedding
the flu viruses and infecting people around us.
• Influenza viruses are characterised by constant evolution.
This means there can be a new threat every year.
The good news – you can protect yourself and others by
practicing good hygiene etiquette:
• Turn away from others when sneezing or coughing.
• Cover your mouth and nose with a tissue or your sleeve.
• Use disposable tissues rather than a handkerchief.
• Put used tissues into the nearest bin.
• Wash your hands or use an alcohol hand rub as soon as
possible afterwards.
Hand washing is the single most effective way of killing
the flu virus and limits the spread of influenza and other
respiratory infections.
Wash your hands with soap and water or an alcohol-based
product (gels, rinses, foams) that doesn’t require water:
• after coughing, sneezing or blowing your nose;
• after being in contact with someone who has a cold or flu;
• before touching your eyes, nose or mouth; and
• before preparing food and eating.
Stop the spread in your household
Flu viruses can survive more than eight hours on hard
surfaces. Regular cleaning of frequently touched surfaces
such as door handles and benches will help avoid
contamination. Flu viruses can be inactivated and removed
with normal household detergents. Keep personal items
such as towels, bedding and toothbrushes separate. Don’t
share cutlery and crockery, food or drinks.
This information, and more, is available at
flusmart.org.au
8
Winter 2015 The MS Society of South Australia & Northern Territory

The invisibility of loss
Leonie Wellington
Here at MSSANT, we try to provide our Clients with
information on how to live well and make informed choices.
What can be forgotten, in looking toward the future, is taking
the time to grieve what has been lost. Living with MS is a
unique experience for every person diagnosed, as are the
many losses that may go along with that.
In our society, grief and loss are inextricably linked to death
and dying. The definition of loss, however, actually relates
to the feeling of grief after losing someone, or something of
value. So, in fact, grief and loss can be experienced daily in
varying degrees, depending on how much value a person
places on the loss.
Unfortunately, not all losses are viewed as equal in our
society, nor are some even recognized as requiring time to
grieve. This can be difficult for people living with an ongoing
chronic health condition that is unpredictable and has losses
that are often invisible to those around them.
Losses can accumulate over time. It may be a series of
smaller things on an ongoing basis that build up to what may
become an overwhelming sense of grief. Much like anxiety,
grief can sneak up on us and we are left asking ourselves,
“Where did that come from?”
It is easy to minimize loss. People will often compare
themselves to others and reflect that their loss is not as
great, and so therefore doesn’t deserve sadness. I cannot
stress this enough – just because someone’s circumstances
seem worse than yours, in no way does that make your own
loss any less important.
Those close to a person living with MS can also be affected
by experiences of loss and grief. Again, it may seem
inappropriate to acknowledge these feelings, as you are
not the one who has been diagnosed with MS, but loss
of certainty about the future, or the changing roles within
families and relationships, can all generate feelings of grief.
It is helpful to remember that by not allowing yourself or
others permission to grieve, it may then come out in ways
that may be harmful to your relationships and your general
wellbeing. Acknowledging loss, and the impact it has on you
or those close to you, allows for an opening to adjust and
change and live well beyond that experience. It is one of the
ways to build resilience.
The MS Society of South Australia & Northern Territory Winter 2015 9

Multiple Solutions has been a specialist employment service since 1992. We seek to
make a difference in the lives of individuals by helping them to break down the barriers
to employment and assisting them to achieve a sustainable, self-directed future.
By helping our clients identify these barriers, and by offering them ways to help
address these issues, we are empowering individuals to maximise their abilities and life
opportunities and impact those around them. Here are some of our success stories.
Bradley Crack
Bradley reached out to
Multiple Solutions after
being unemployed for six
months. Despite suffering
from Addison disease
and hypothyroidism, he
managed to secure a job
as a delivery driver. He is
overjoyed with his new
role and thanks everyone
who supported him.
Olivia Bernauer
After 4 years of
unemployment, Olivia
was able to overcome
depression, a learning
disability and obsessive
compulsive disorder to start
a new role as a massage
therapist. She is over the
moon with her new role
and would like the team
at Multiple Solutions for
helping her in her journey.
Medical Communication Systems
Employment Consultant Danielle Carpenter (pictured)
was able to secure a telecommunications traineeship with
Medical Communications Systems (MCS) for a Multiple
Solutions participant.
James Hollo (L), Managing Director at MCS and Michael
Mullins, MCS Project Manager, have been very supportive
and proactive employers who have worked together with the
Morphett Vale Multiple Solutions team to ensure the best
possible outcome for the client, MCS and Multiple Solutions.
MCS is the South Australian Integrator of Austco Nurse
Call Systems, providing 24/7 technical service and the
installation of Electronic Health Care Products and Care
Assist Solutions to Hospitals and Aged Care facilities.
For more information, head to multiplesolutions.com.au
or contact us on (08) 7002 6500.
10
Winter 2015 The MS Society of South Australia & Northern Territory

Disclosure –
to tell or not to tell?
Mike Smith
Disclosure is tricky. When diagnosed with MS, the event can
either go by noticed or unnoticed to the outside world. This
can then determine what path you may take with disclosure.
You often get advice not to disclose, and often for very good
reasons. There are a number of instances where it can
be held against you. In my case, it was reasonably public
right from the start. I was working on a major underground
project, in a very tight team and in a small town, so there
was nowhere to hide even if I had wanted to.
The onset of my initial symptoms resulted in me taking
some time off to get intravenous steroids. I then went back
to work, only this time with unremitting sensory symptoms
that are still with me to this day. At this stage it was the
netherworld of waiting for confirmation of the diagnosis.
Six months later, there was a subsequent event which led to
confirmation of the diagnosis of MS. On returning to work,
I informed my manager at the time and left with tears in my
eyes. It was all just too traumatic for me.
Subsequently, as I moved around the world working on
various projects, I have informed each employer of my
situation. Almost without exception, the result is the same,
irrespective of nationality and country of location. Following
a stunned silence, I sit down with the manager, inform them
and after that, literally years go by without a mention.
You may well ask, “Why don’t you initiate some discussion?”
A valid question, but having made the disclosure in the first
place, I don’t want to run around too much and reinforce or
stimulate anything unnecessarily from my side.
However, don’t be fooled. Even though no one may be
talking to you directly about MS and how it impacts on you,
people will still be talking - just not to you.
I spent quite some time working for a global mining
company and one of the key leadership aspects was that
of establishing an environment of “visible felt leadership”.
The focus was on leadership and the quality of genuine
engagement with your team. In my experience, this can
often translate into, “Do as I say, not as I do”. This was
reinforced to me twice when I was directly and indirectly
refused an opportunity to be considered for a transfer.
On the first occasion, I had enquired about moving to an
offshore location to an executive with whom I had never
worked. The response was, “That may be an issue, because
you would have to be medevac’d to an offsite major
location”. This response came from nowhere, and I actually
had to stop and think of what he was talking about. It then
dawned on me, and I asked if this was related to my MS.
He responded, “Yes”. I was then advised to keep looking for
other opportunities.
Four years later, out of the blue, and completely unprompted,
I was informed by a colleague that he had mentioned my
name to the same executive as a replacement, and the
response was, “I don’t want sick people here”. On the
first occasion, I just moved on, deciding it was not worth
getting upset, but upon hearing the same message from
a completely different source, I was furious. Here I was,
running projects in the multi-millions of dollars, for ventures
that would ultimately be worth billions, and the perception
was that I was ‘sick’!
My wife constantly advises me not to tell, as in my
environment MS is regarded as a sign of weakness. Maybe
my wife is correct; the silence that greeted me after I
had the courage to disclose, and the reinforcement from
third parties, seem to bear out her opinion, but given my
achievements, I do not feel that at all.
I fully recognise that our world has lots of variety – that’s
what makes it so interesting - but in my case, disclosure and
the subsequent reaction really unpacks some true human
traits. In this day and age, when there is so much press and
rhetoric about understanding and compassion, one has to
be careful about just how disclosure will really play out. The
cynic would say that in my experience disclosure has been
analogous to having a brother in jail – everyone knows about
it, but no one talks about it.
These experiences I’ve shared are my own; they are simply
my observations. Much the same as MS symptoms, no one
person is the same. Similarly, the reaction around you will be
different. Judge your own environment.
Has my disclosure held me back? Apart from the annoyance
of one very senior executive, I would have to say, “No”.
While my symptoms are still with me as a constant reminder,
I have been able to actively engage myself in my profession,
and to work and travel globally.
As a closing thought on disclosure, you need to be aware
before you have to beware! Remember though, whatever you
do – Aziko wo! (Zulu for “don’t stop”) There is too
much to lose.
The MS Society of South Australia & Northern Territory Winter 2015 11

Cruising with Stephen
Mary-Anne Edge
In the lead up to the MSSANT Travel Forum on 20 July,
one of our SA Clients wanted to share his recent
travel experience.
In 2014, Stephen was fortunate to be granted a MS Choice
Award which provided funds towards an overseas holiday.
Stephen was excited about the prospect of going on a
holiday, and felt it would give him the opportunity to have
something positive to reflect back on and remember. In
January this year, Stephen set sail on the holiday of a
lifetime – a 12 night P&O cruise to the Pacific Islands.
Stephen knew this would be a unique experience, and as he
has lost his sight, he travelled in a wheelchair and brought a
friend with him.
The cruise had everything Stephen could hope for –
island-hopping, tender boats, beaches, cyclones, rough
seas, amazing food and drink, great company and lots and
lots of fun. The highlight for Stephen was the entertainment.
He loved the music, the shows and the disco. He could feel
the rain and hear the waves crashing against the boat. Even
though it was hard work getting onto the islands, there were
new experiences to enjoy such as the locals playing their
drums, the intense heat, and making new friends.
But, it could have been better. There were many simple
things that if provided would have made the experience
more comfortable. Things like a suitable shower chair, a
toilet raise, a bed rail, and a telephone that could be reached
from the bed. The disabled toilets were located within the
gents or ladies bathrooms, making it hard to access them
when your carer is the opposite sex. Being blind, it was often
hard to get bar service, and to know if the staff were there
ready to serve. Stephen was also unable to access the
pools or spas.
Would Stephen cruise again? He sure would, but he would
want these shortcomings addressed. His advice to others
living with MS is to ensure your sleeping and personal care
needs can be accommodated before your trip commences.
And, if you use a wheelchair, travel with a carer.
Armed with the right knowledge and preparation, travel
can be comfortable, rewarding and incredibly fun.
Come to the Travel Forum and learn more about it.
Details can be found on page 13.
12
Winter 2015 The MS Society of South Australia & Northern Territory

Information
Sessions 2015
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.
Travel Forum
In conjunction with RAA travel, we are offering a travel forum to discuss suitable destinations,
accommodation and activities, with advice on travel insurance and other useful tips.
Presenters include:
Staff from 2 cruise suppliers
Travel insurance representative
RAA travel consultants
MS Health Staff
We hope to show you how it is possible to travel, ways to make travelling comfortable
and easy, and top accessible destinations around the world.
Hear fellow travellers share their experiences and travel tips; learn from the things
that went well and those that didn’t.
The event is free to all MS Clients and their family and carer.
Date: Monday, 20 July 2015
Time: 6pm – 8.30pm. Light supper provided.
Location: Unley Town Hall, 181 Unley Road, Unley
RSVP: by Friday, 10 July to MS Assist 1800 812 311 or msassist@ms.asn.au
Newly Diagnosed
People living with MS and their families are warmly invited to an informative and practical
information session to guide their first steps with multiple sclerosis.
The programme will include a presentation ‘Overview of MS’, which will include the latest
in MS research and treatments and a Q&A session with a neurologist. There will also be
a brief introduction to the services provided by MSSANT and time to meet with staff and
others living with MS.
Date: August 2015, 6.30pm
Venue to be advised.
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.
The MS Society of South Australia & Northern Territory Winter 2015 13

Living a meaningful life
with multiple sclerosis
Sook Ling, Tho
I still remember the first time a neurologist told me I might
have MS. I accepted it in a state of disbelief. I was totally
ignorant of this unpredictable autoimmune condition, and its
complications. I simply couldn’t believe that such common
symptoms like hand numbness and fatigue, could lead to
blindness or paralysis. After seeing three neurologists -
two in Malaysia and one in Australia - I had the answer:
Yes, I had MS.
That was in 2012, after which the way I saw things in life
began to change. I used to take my health for granted,
coming up with excuses for not exercising and eating
healthy. I was a dedicated civil engineer and worked under
extreme stress, but after the diagnosis I realized just how
important our health and family are to us. That’s when
I knew I had to change my lifestyle and adopt a positive
mindset to fight MS. I am now 40 years old with a beautiful
daughter and a very understanding husband.
I am still an active civil engineer here in Malaysia and will
migrate to Australia eventually to continue my professional
career. MS hasn’t stopped me from working, or going to
construction sites, or doing household chores; however, I
have learned to delegate work to my subordinates, and to
give some household chores to my family.
I also attend Qigong classes and regularly exercise. I like
hiking, walking, running, swimming and going to the gym.
My hand numbness worsens with heat. Therefore, I exercise
indoors or in the morning.
Eating healthy food is just as important. I remember my
neurologist telling me to have a healthy balanced diet —
carbohydrates, fats, proteins, vitamins, minerals and water,
all in their proper proportions, so as to maintain good health.
My last MRI scan in December 2014 showed that my MS
is now in remission. My symptoms have not worsened and
neither are there any new signs of activity since my original
diagnosis in 2012. I chose not to take medication, and
consider myself lucky MS has not impaired my vision or
mobility; however, because MS is so unpredictable, I simply
can’t take things for granted.
Living with MS is not easy and can be frustrating at times.
People around us may not understand how this chronic
condition affects us physically and mentally. However,
MS is not a death sentence either. It is different for every
individual. It becomes our role then to live our own lives to
the fullest, and to make our lives meaningful and beautiful.
14
Winter 2015 The MS Society of South Australia & Northern Territory

Friends
Ros Harman
When I moved house nine years ago, I made some new
friends. I bought myself an electric wheelchair to get around,
and soon discovered I automatically gained a whole bunch
of friends from the group “People with Disabilities Who Hang
around my street”.
This group included Bill - a gnarly, little old man who looked
a lot like Popeye in a wheelchair, and was always keen to
stop for a chat. Over the next couple of years, I heard his life
story, as he recounted it in his cheerful cockney accent. He
had joined the merchant navy in Britain at 14 years of age
and travelled far and wide. Terrible arthritis began to attack
his joints at the age of 40, but he always had a smile for
me, and was well known in most of the local shops. He lived
alone in a ground floor flat and visited the shops every day.
One day he asked if he could buy me a cup of tea to
celebrate his 80th birthday. I am ashamed to say I was
faintly embarrassed when we went into the cafe together
in our electric wheelchairs. Poor old Bill found steering
between the tables and chairs a little difficult with his
misshapen hands, and he bumped most of the furniture as
he crashed and banged his way up to the cash register. He
ordered tea and cakes for us both, shamelessly took a large
handful of paper serviettes which he shoved into his pocket,
then careened back through the tables to join me. During
our conversation he told me he was going to hospital the
next day for a small medical procedure. “It wouldn’t be a
bad thing if I don’t wake up from the anaesthetic,” he said.
“There are worse ways to go.”
Over the next few days I kept my eye out for Bill, but as time
went on and he didn’t reappear, my heart sank. I began to
wonder if his words had been prophetic. Weeks went by
and I asked around in the shops, but no-one had seen him.
Eventually, I concluded that he had gotten his wish. I hoped
I had given him a little bit of pleasure by sharing his last
birthday with him.
But the story doesn’t end there. Recently a neighbour told
me that Bill had moved to an aged care facility in a nearby
suburb. He has joined another group. I’m quite certain he is
still crashing around in his chair and flirting with the ladies.
I’m sure he has made new friends.
“No man is an island,” said John Donne in 1624. It is a
curious fact of life that everyone belongs to a group. No
matter how determined you are to be unique, it is an
incontrovertible truth that there will always be someone,
somewhere, who shares one or more characteristics with
you. You may very well try to stand alone and isolated in this
ocean of life but the reality is, as John Donne told us, we are
all part of the great mega-continent of humanity. Everyone
belongs to some sort of group, whether we like it or not.
Edward is another member of my group. He regularly sits
in the sun on the bench outside the Post Office. Edward
has one wonky eye, one wonky leg, and I am pretty sure
his brain is a bit wonky too. He loves to learn and memorize
details and every time I stop for a chat he proudly recites,
“Your name is Ros and your birthday is on the 21st of
March!” Edward was born on the same day as my sister.
I know that because he reminds me every time I see him.
Sometimes, I try to start a conversation about something
else with him, but he is not really interested in anything
other than birth dates.
Edward has always finished conversations by asking if he
can borrow $1.50. About a year ago, he put the price up to
$2, which is reasonable I suppose, given the state of the
economy. I’m sure he’ll pay it all back one day, because he
is my friend.
There are a few other people in my local group of friends
too. There is the woman who lives in the house with the
overgrown garden, and struggles to find employment
because of a lifelong battle with anxiety. There is the
professor at a local university who has used a wheelchair
since a childhood accident. I see these people only rarely,
but we chat when we meet.
When I was first hammered with the reality that I would be
living with MS for the rest of my life, I joined a large group
of people with something in common. It is a great solace to
have people in your life who understand what it is like to live
with MS, and who can laugh and cry with you through the
ups and downs of life. That’s what friends are for.
According to Facebook I have 57 friends. That doesn’t
include my friends Bill and Edward, who don’t have
computers. Even if half of them are relatives, I suppose
that’s not bad for a middle aged woman in a wheelchair.
The MS Society of South Australia & Northern Territory Winter 2015 15

Peer Support
Evidence clearly shows the benefits of peer support programs.
Our Clients and people living with MS have found them to be
friendly, supportive, informative and practical.
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 & reinvigorated peer support groups
There are again a number of new groups we hope will
start meeting this year, they all welcome new members
to join them.
Under 35s (or a bit older) –
a group meeting in the southern suburbs.
Eastern suburbs –
we are looking to start a new group in the Unley area.
Parents with kids –
a chance for parents with MS to chat while their
children play. The group has met at various indoor and
outdoor play areas.
Contact Mary-Anne on (08)7002 6500 for details of
the next event or if you can help in organising events
for these groups.
We are also seeking interest in:
• support groups in Whyalla, Clare & Alice Springs;
• starting an Overcoming MS group in the southern suburbs
of Adelaide; and
• support groups for family and friends of those with MS.
NB: there is now an on-line group called MySociety -
Family and Friends.
Please contact Mary-Anne Edge on (08) 7002 6500
or at medge@ms.asn.au if you would like to join one
of these groups.
Facebook support group – My Society –
Family and Friends
We have recently set up 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.
This group is for family, friends and carers of people with MS
in SA & NT only, not for people living with MS.
facebook.com/groups/1388437131394906/
Facebook online support - MySociety
There is an online Facebook group for people living with MS
in SA & NT. This is a private place to chat and 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. Head to
facebook.com/groups/MySocietySANT/ to find the group and
request to be a member.
16
Winter 2015 The MS Society of South Australia & Northern Territory

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 CONTACT
Adelaide Hills – Mount Barker 3rd Monday of each month David
6.30pm – TAuchendarroch Tavern, Mount Barker 0410 451 301
Barossa 3rd Thursday of each month Penny
11am – Tanunda/Nuriootpa 0488 952 211
Broken Hill Sundays, every two months Tanya
11am – Gloria Jean’s Coffee, Bromide St 0410 822 511
City based for workers 2nd weekend of every month Jess
Various city locations 0403 155 696
Clovelly Park 4th Friday of each month Christine Sutherland
12pm – Tonsley Hotel/Silks (08) 8276 3779
Morphettville Junction
Copper Triangle 1st Wednesday of each month Allan
11am – Various venues 0498 386 949
Darwin Various venues Sarah
0439 885 604
Fleurieu Random Tuesdays Jill Masters
12:30pm – Rotated around Fleurieu eateries (08) 8555 0358
Gawler 2nd Monday of each month Helen Hoppmann
10am – Gawler Women’s Health Centre 0403 295 348
Gawler evening group Various venues Helen
0403 295 348
Hard Yakkas (Salisbury) Last Wednesday of each month Tallia Coulter
12pm – Café Maranello 0403 766 157
Kapunda 2nd Tuesday of each month Pauline
6.30pm – Various venues 0427 010 754
Kensington 3rd Monday of each month Pam Schartner
(Overcoming MS group) 7pm – Pembroke College (08) 8331 9360
Modbury Last Tuesday of each month Gary Griffiths
10am – Independent Living Centre, Gilles Plains (08) 8263 7760
Mount Gambier 1st Friday of each month Len Stidwill
1pm – Various hotels in Mount Gambier 0403 218 971
Noarlunga 1st & 3rd Thursday of each month Jude Brown
12.30pm – Various lunch venues (08) 8322 5441
Port Lincoln 2nd Tuesday of each month Rick Cunningham
4.30pm – Various venues 0429 977 082
Port Pirie 2nd Wednesday of each month Anne
1pm – GP Plus Health Care Centre 0448 321 610
Riverland 1st Tuesday of each month Crystal
10am – The Big River Golf Club and other venues 0418 690 013
South East Support Group 3rd Thursday of each month Kay Cavill
10.30am – Settlers Café, Naracoorte 0407 615 118
Tailem Bend Wednesdays, mid-monthly Sue Griffiths
Various venues (08) 8572 3914
Under 35s (and a bit older) 2nd Monday of each month Nicole
6.30 pm – Various venues, north of the city 0417 003 547
Western Suburbs Last Tuesday of each month Enza
10am – Various venues 0433 972 312
The MS Society of South Australia & Northern Territory Winter 2015 17

Physiotherapy
classes restart in SA
Margot Strelan Physiotherapist
As a result of your support, we are pleased to announce
the re-commencement of three physiotherapist supervised
exercise programs. The exercise programs have been made
possible through targeted donations and a new partnership
with Life Care Active.
Life Care Active has an accessible, purpose built facility and
they offer a range of exercise programs for the over 55’s.
We have established a mutually beneficial arrangement
where we have use of their venue free of charge and in
return they have access to some of our equipment housed in
their gym.
We currently have 24 Clients registered for classes and run
three one-hour classes run every Monday morning.
Classes consist of a combination of exercises that includes
resistance band strengthening, balance circuit, core stability
exercises, and modified boxing and coordination activities.
Classes also include seated warm ups, stretching and
relaxation at the end of the session.
Participants all benefit from the social interaction and
camaraderie of exercising together and sharing their
experiences and knowledge of MS.
Our long term plan is to transition these groups to Life Care
Active physiotherapists so that we can establish similar
groups in other locations. I will provide specific training for
the Life Care physiotherapists, educate them on how to work
with MS and continue to support those attending the groups.
18
Winter 2015 The MS Society of South Australia & Northern Territory

Motomed Exercise
machine in Darwin
People living with MS are welcome to come and use the
Motomed that is based at Therapy Services in Darwin.
Thanks to funds from the MS Society, we were able to
purchase a Motomed for MS Clients and others with a
neurological or physical disability. The Motomed gently
moves legs and arms, and is ideal for daily passive,
assistive and active movement training.
If you would like to use Motomed, you will need to
complete a referral form and undergo an assessment.
Please contact Darwin Day Therapy Centre on
(08) 8922 6670 or email Tsdarwin@ech.asn.au
for more details.
NT Carers Australia
This publication provides carers with information on how to make life a bit easier.
For example, did you know that Smart Cooling in the Tropics provides free home
energy assessments and a range of retrofit packages for eligible households?
Did you know that there are support groups and workshops in Darwin specifically
for carers? Did you know that you can speak to Counsellors at Carers NT?
For more information, visit their website carersnt.asn.au or contact them on 1800 242 636.
Sunday, 8 November 2015
missmuddy.com.au
The MS Society of South Australia & Northern Territory Winter 2015 19

Tour Barossa
Run by Kym & Steve, Tour Barossa
offers a multitude of ways for you
to experience the Barossa Valley.
Choose from the:
• Barossa highlights tour;
• Adelaide Hills tour;
• McLaren Vale Tour;
• Tour Clare;
• “secret experiences” tour;
• private charters;
• private tours; or
• wedding packages.
Mention the The 2015 MSchievous
Bunch Calendar when making a
booking and Tour Barossa will
donate 20% of the fee
to the MS Society!
Book online: tourbarossa.com
E: book@tourbarossa.com
P: (08) 8563 1000 M: 0412 1217 19
Contact us on (08) 7002 6500 or
email kfowler@ms.asn.au
entertainmentbook.com.au/orderbooks/161y000
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