Network Spring 2016
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network<br />
The Official Magazine of the MS Society of SA & NT | ms.asn.au<br />
Read about Anna and Josie’s amazing skydive.<br />
<strong>Spring</strong> <strong>2016</strong><br />
Skydive for MS<br />
Dietary information<br />
Peer Support<br />
Self-Compassion: Our greatest ally
Inside | <strong>Spring</strong> <strong>2016</strong><br />
Letter from the Editor<br />
Libby Cassidy<br />
The Multiple Sclerosis<br />
Society of SA & NT (Inc.)<br />
Telephone (08) 7002 6500<br />
Fax (08) 8164 1599<br />
MS Assist Freecall 1800 812 311<br />
msassist@ms.asn.au<br />
Client Services<br />
Directory<br />
GENERAL MANAGER – CLIENT SERVICES<br />
Sue Shapland (08) 9365 4840<br />
HEAD OFFICE<br />
341 North East Road<br />
Hillcrest (08) 7002 6500<br />
MULTIPLE SOLUTIONS<br />
BRIGHTON<br />
7a Sturt Road (08) 8198 1400<br />
CHRISTIES BEACH<br />
Unit J/111 Beach Road (08) 8392 0100<br />
ENFIELD<br />
273 Main North Road (08) 8360 0800<br />
MODBURY<br />
31 Smart Road (08) 8203 6600<br />
MORPHETT VALE<br />
Shop 3/204<br />
Main South Road (08) 8187 2100<br />
SALISBURY<br />
6-8 John Street (08) 8256 3700<br />
TORRENSVILLE<br />
130 Henley Beach Road (08) 8164 1550<br />
WOODVILLE<br />
51 Woodville Road (08) 8345 8700<br />
Please direct all enquiries to<br />
MS Assist on 1800 812 311<br />
or email msassist@ms.asn.au<br />
Contact Us<br />
If you would like to comment<br />
on anything you read in this<br />
<strong>Network</strong> please email<br />
feedback@ms.asn.au<br />
or write to<br />
MS SA & NT, PO Box 377,<br />
Salisbury South DC SA 5106<br />
The <strong>Network</strong> can also be viewed at<br />
ms.asn.au<br />
The Editor welcomes unsolicited submissions.<br />
All articles are subject to a reviewing process.<br />
The views expressed are those of the Authors<br />
and do not necessarily reflect the view of the<br />
Society’s staff, advisors, Directors or officers.<br />
Letter from the Editor 3<br />
From the desk of the CEO 4<br />
A message from the General Manager – Client Services 5<br />
Meet our CEO in waiting – Helen McLean 6<br />
Dr Google – To believe or not to believe? 7<br />
Round-up of research and other items of interest 8-9<br />
The National Disability Insurance Scheme (NDIS) 10-11<br />
MSchievous Bunch Cooling Vest Grants 11<br />
Overview on type 2 diabetes 12-13<br />
Five tips for getting a mental health boost for people with MS 14<br />
Purchasing equipment? We recommend you speak to an OT first! 15<br />
Accessible vehicle for trade 15<br />
Workplace Solutions 16<br />
Share your MS experience in an eBook 16<br />
Dietary information 17<br />
Peer Support 18-19<br />
Information Sessions <strong>2016</strong> 20-21<br />
Self-Compassion: Our greatest ally 22-23<br />
That’s life with Narelle 24<br />
Anywhere with Colin 25<br />
Skydive for MS 26<br />
Running the Barossa Marathon 27<br />
Do you know what services are offered by your local council? 27<br />
NURSING<br />
Our nursing team is usually the first point of contact, after the neurologist, for anyone<br />
diagnosed with multiple sclerosis. We’re committed to providing holistic support so you have<br />
a greater understanding of what to expect from your condition.<br />
OCCUPATIONAL THERAPY<br />
Occupational therapists work with Clients referred through the Disability and Community<br />
Services Program, providing assessments and recommendations for aids and equipment.<br />
SOCIAL WELFARE<br />
Our welfare officer is here to provide information about entitlements,<br />
how to access community services, advocacy and other essential supports.<br />
PEER SUPPORT<br />
Peer support groups help people living with multiple sclerosis provide support for each<br />
other and share their experiences. There are several groups meeting across the state.<br />
They provide a safe place for the sharing of information and helping each other.<br />
Welcome to the <strong>Spring</strong> <strong>2016</strong> edition of <strong>Network</strong>!<br />
It feels like spring is desperately trying to break through<br />
what has been a long winter. Whilst I love all seasons and<br />
am grateful for the changes they bring, I definitely favour the<br />
sunshine and being outdoors. I am loving my morning walks<br />
with the sun rising, and whilst it’s still very cold at 6.30am,<br />
it is definitely getting a lot lighter!<br />
There are so many positive MSSANT stories to report this<br />
quarter, and each story you will read within these pages tells<br />
of growth, strength and great results. It is inspiring to see<br />
how far the Society has come and what its future holds.<br />
We are now well and truly settled into our new Head Office<br />
premises in Hillcrest. This fantastic location is quite a<br />
beacon from the street with its striking red pillars, and<br />
already we have received great feedback about our presence<br />
on North East Road. It is great to have more staff housed<br />
together in one location. We are most pleased though, that<br />
these larger premises will allow us to grow the services<br />
and support we can provide to our Clients, making it more<br />
of a true ‘Client Hub’. We are planning the introduction of<br />
physiotherapy and group programs, will host education<br />
sessions, and offer a ‘drop in’ space for Clients who just<br />
need to pay us a visit from time to time. Stay tuned for<br />
how these plans roll out. We really look forward to<br />
welcoming you!<br />
I’m also looking forward to you meeting our new MSSANT<br />
‘CEO in waiting’ Helen McLean, who will officially start her<br />
duties in the coming months. Look out for a ‘hello’ from<br />
Helen in this edition, and much more in the future.<br />
The rest of this edition is packed full of great information,<br />
tools and stories for people living with MS. There is a great<br />
article on diet with some information from MS Australia<br />
which I hope you find useful. There is also a great update<br />
on the roll out of the National Disability Insurance Scheme<br />
in both SA & NT. It provides all the details of how the roll<br />
out will be happening in your area, and some stories from<br />
people who have been through the process already.<br />
As usual we have a great range of Information Sessions to<br />
have a look at, and events to support!<br />
If you have any ideas for sessions or need more<br />
information, please call MS Assist on 1800 812 311<br />
or email us at feedback@ms.asn.au<br />
As always, I invite you to send your feedback or your<br />
story ideas to feedback@ms.asn.au; I would love to<br />
hear from you. Enjoy the nicer weather, and I look<br />
forward to bringing you our next edition of <strong>Network</strong>.<br />
Do you want to receive the <strong>Network</strong><br />
online? Want monthly information<br />
updates?<br />
Register your email address today to start receiving our<br />
monthly e-newsletter and the <strong>Network</strong> magazine online.<br />
Just email feedback@ms.asn.au or call 08 7002 6500 and let<br />
us know your current email address.<br />
2 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 3
From the desk of the CEO<br />
Marcus Stafford<br />
A message from the General Manager<br />
– Client Services – Sue Shapland<br />
In an Olympic year, it is very fitting that the MS Society of<br />
South Australia and the Northern Territory (MSSANT) finish<br />
in a record breaking position of strength.<br />
Through what has been a true team effort, we have<br />
recorded a positive performance across all areas of the<br />
business, and the Society sees itself firmly on very solid<br />
ground with an exciting future ahead.<br />
Some of the highlights include:<br />
• The posting of the highest gross revenue and net profit/<br />
surplus in the Society’s history.<br />
• A return to contributing financially to both MS Australia<br />
and to MS Research Australia.<br />
• The repayment of a substantial portion of the Society’s<br />
debt. Our outstanding loan balance now stands at<br />
$433,333 – down from $1,150,000 just two years ago.<br />
• 30% growth in Client services for the year. Real things<br />
to real people. Allied healthcare services that make a<br />
significant difference in the lives of people with MS.<br />
• In line with strategy, the growth of our footprint including<br />
the new Client services hub at Hillcrest.<br />
We are now in fantastic shape to welcome the full roll out<br />
of the National Disability Insurance Scheme (NDIS).<br />
It was recently announced that this will occur progressively,<br />
across the State, over the next two years with adults able<br />
to register for the Scheme and assess their eligibility,<br />
from 1 July 2017.<br />
To extend the imagery of our Olympic year, victories are<br />
always sweet. But ‘come from behind’ victories are perhaps<br />
the sweetest of them all.<br />
As many will recall, life for the Society was perilously<br />
difficult three years ago and so our turnaround in recent<br />
years is a proud moment in our history.<br />
Our healthy position allows the Society to return to local<br />
management and I am sure the Board, Management and<br />
staff are all excited and eager to work with Helen McLean<br />
as the new Chief Executive Officer of the Society.<br />
Helen will officially commence her full duties shortly, and<br />
is already on board working closely with me through the<br />
transition process.<br />
This will, therefore, be the last time I have the privilege of<br />
writing a <strong>Network</strong> article as your CEO. As I fade into the<br />
Western Australian sunset, I look back with satisfaction on a<br />
challenging, but ultimately rewarding journey for our Society.<br />
Although, as CEO, I am delighted to take the bouquets that<br />
go with the outstanding results that have been delivered,<br />
(just as I would have taken the brick bats!), it has been<br />
a true team effort. This result has only been achieved<br />
with a courageous and supportive Board, a truly brilliant<br />
management team, both in Western Australia and South<br />
Australia and a dedicated workforce of over 100 staff<br />
working tirelessly for the ultimate benefit of people with MS.<br />
The foundations are in place and the Society is poised to go<br />
from strength to strength. So, I will watch the progress of<br />
the Society with more than just a little interest. I will enjoy<br />
the positive developments for people with MS, knowing that<br />
once upon a time, I played a small part in leading a team<br />
that helped to lay the foundations of success.<br />
My sincere best wishes and unswerving confidence for<br />
the Society’s successful future.<br />
“We should always have three friends in our lives - one who walks ahead who<br />
we look up to and follow; one who walks beside us, who is with us every step of our journey;<br />
and then, one who we reach back for and bring along after we’ve cleared the way.”<br />
Michelle Obama<br />
There is so much going on at the moment both here and<br />
overseas it’s hard not to get caught up in the hype and feel<br />
that at times we live in a slightly crazy world; but also a<br />
pretty lucky country.<br />
I know you should never talk politics but the possibility of<br />
Donald Trump being the next President of the USA is a bit<br />
of a challenge for me! The ongoing random acts of terror<br />
make us both concerned but also grateful that for the<br />
most part we live in a country buffered from much of this<br />
unpleasantness. Watching the news isn’t always enjoyable<br />
although the Olympics provided some much needed respite.<br />
I think we can often focus on the negatives and then fail to<br />
appreciate what we can be grateful for, both now and into<br />
the future. We are really lucky we have subsidised access<br />
to all of the MS therapies; many countries including the UK<br />
don’t. This provides greater choice and the opportunity to<br />
switch therapies if things aren’t going as planned.<br />
Our health system has its faults and issues but overall it’s pretty<br />
good and the standard is high and access relatively easy.<br />
The NDIS is another reason to be glad we are living in<br />
Australia. When this Scheme reaches full roll out, over<br />
460,000 people with disability will be participating and<br />
receiving funding to access the supports they need. Whilst<br />
access is currently limited to designated trial sites, planned<br />
roll out areas by postcode and age groupings, the planning<br />
for full roll out is under way. I have provided an update on<br />
the NDIS again in this issue. We hear many positive stories<br />
from people with MS, and others, who are now in receipt of<br />
individual funding for the first time. This continually validates<br />
the decision for this massive policy change.<br />
Through diligent management of expenses, and some funds<br />
raised through events, donations, raffles and the Game<br />
Changer Lottery, we have been able to grow our Client<br />
Services Team and the service hours delivered.<br />
Whilst our team is small, they really do work hard to ensure<br />
there is a range of supports and informational resources and<br />
seminars available throughout the year. The Peer Support<br />
Groups continue to provide a vital link and the MS Assist<br />
line is there to link you with the team or provide you with the<br />
information you are seeking. Our Occupational Therapists<br />
are a very enthusiastic group and Anna even skydived in the<br />
name of MS! Read about it on page 26 of this edition.<br />
The most exciting development has been the re-location<br />
of the head office to Hillcrest and of course the recent<br />
appointment of the new Chief Executive Officer Helen<br />
McLean. Hillcrest provides us with a roomy, centrally<br />
located position and importantly, brings the Client Services<br />
Team together with space to create consulting rooms and a<br />
physiotherapy area. It has a great feel about it and the staff<br />
are keen to have some new Client opportunities to share<br />
with you soon.<br />
This winter has been pretty cold, with some challenging<br />
storms here in SA; I think everyone is now glad to see spring<br />
arrive. I hope you have avoided the dreaded flu and things<br />
are going okay for you.<br />
If you would like to make contact with any of the<br />
Client Services Team for advice or information, please<br />
don’t hesitate to give Amy a call on the MS Assist line<br />
1800 812 311 and she will help you with your enquiry.<br />
MSSANT has had a successful financial year in many ways!<br />
4 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 5
Meet our CEO in waiting –<br />
Helen McLean<br />
Dr Google –<br />
To believe or not to believe?<br />
Liesl Murdoch, Counsellor<br />
My journey with the Society commenced on 9 August and<br />
every moment has been wonderful!<br />
I have been very warmly welcomed and my learning curve<br />
has been steep and rewarding.<br />
I come to you as the new CEO, after extensive Senior<br />
Executive careers across a number of not for profit<br />
organisations, including Guide Dogs SA&NT, Animal<br />
Welfare League, Girl Guides SA, and the Federal<br />
Government as a Director in the Fair Work Ombudsman<br />
and other departments.<br />
Throughout my professional career, I have always<br />
held a candle for the Multiple Sclerosis Society and its<br />
valuable contribution to its Clients and the South<br />
Australian community.<br />
START TIME:<br />
12.15PM SAT 11 FEBRUARY 2017<br />
FINISH TIME:<br />
12.15PM SUN 12 FEBRUARY 2017<br />
The Society has always had a very strong reputation in SA,<br />
and more recently this has been maintained by the goodwill<br />
of our interstate colleagues, and in particular, MSWA. With<br />
our disability employment service, Multiple Solutions, at our<br />
side, the Society will build on the strong foundations we<br />
have been given, looking to the future to ensure growth,<br />
opportunity and progress, which includes the provision of<br />
exceptional Client service through the NDIS.<br />
At the Multiple Sclerosis Society of SA & NT and<br />
Multiple Solutions, we do great things each and every<br />
day to help make life easier for those we support –<br />
people living with MS.<br />
Helen McLean<br />
Make a splash as The MS Mighty Swim returns in February 2017!<br />
We’d love you to join us in raising funds to support people living<br />
with multiple sclerosis in South Australia and the Northern Territory.<br />
REGISTER AT<br />
msmightyswim.com.au<br />
CALL (08) 7002 6500<br />
EMAIL events@ms.asn.au<br />
Which of you reading this article would put their hand up<br />
if asked, “Have you googled MS?” I imagine that most of<br />
you would. And you would not be alone in answering in the<br />
affirmative. In fact, recent research suggests that 8 out of<br />
10 internet users have looked online for health information<br />
and that 66% of these searches were related to a specific<br />
disease or medical problem. 1<br />
Information found on the net can be helpful. It can increase<br />
your knowledge about MS, its possible causes, current and<br />
future drug treatments and help with symptom control and<br />
management. This new found knowledge can also improve<br />
your communication with health professionals, assist you to<br />
make better, more informed decisions regarding your care<br />
and provide you with a sense of control and mastery over<br />
this often unpredictable illness. However, access to this<br />
digital library is not without its pitfalls.<br />
Entering ‘multiple sclerosis’ into the google search engine<br />
will, in 0.41 seconds, produce a staggering 21,200,000<br />
results! But are all these entries verified and accurate?<br />
Regrettably not, for much of what is on the net is unverified,<br />
inaccurate and often contradictory. It is an urban myth that<br />
all that is written on the web has its foundations in honesty<br />
and integrity.<br />
So how does one decide what is reputable? This can be<br />
done by following a few simple guidelines.<br />
Visit reputable websites<br />
Sites ending in edu.au, gov.au and org.au will take you to<br />
dependable Australian websites e.g. mswa.org.au<br />
• edu – pertains to an educational site such as a university<br />
• gov – government bodies<br />
• org – prominent health organisation<br />
American sites: use the above but drop off the ‘au’<br />
UK sites: replace ‘au’ with ‘uk’.<br />
Look at the credentials of the author<br />
• Articles written by people who are specialists in their fields<br />
will post their qualifications and usually supply an address<br />
for correspondence.<br />
• Thorough academic research is usually undertaken by<br />
a team of researchers so multiple authors suggest the<br />
information may be of greater quality and reliability.<br />
• ‘Testimonials’ may give a personal edge to a story but one<br />
person’s experience cannot be broadly applied across a<br />
greater population.<br />
Look at the date of publication<br />
• It’s hard to believe but the internet has been around for<br />
over 20 years so the more recent the date of publication<br />
the better.<br />
Look at what type of language is being used<br />
• Academic information is often presented using formal/<br />
scholarly language.<br />
• Simplified language and sweeping generalisations or<br />
claims can infer a lack of accurate and plausible research<br />
and information.<br />
Does the site feature online/interactive<br />
‘click on here’ ads?<br />
• Often, less reputable sites have ads which make<br />
unreasonable promises. e.g. “lose 10 kg in 10 days”.<br />
Such ads would suggest the accuracy of featured<br />
information may also be as improbable.<br />
• Ads also suggest the web page would not be in existence<br />
without them. Reputable sources have large organisations<br />
and corporations funding their websites.<br />
Avoid sites that require payment for information<br />
Payment for information implies that someone is trying to<br />
make money from the site and their motives in sharing their<br />
information may be less than noble.<br />
Navigating the web for solid and accurate information<br />
can be a daunting task but it can be done. By using these<br />
guidelines, you can increase the integrity of the information<br />
you are reading. The main thing to remember is to be<br />
selective in what you browse through and take on board.<br />
Dr Google should be seen as a complementary tool to your<br />
MS management and not the principal source of information<br />
and understanding about MS. The internet can assist you<br />
but it cannot be an adequate substitute for the knowledge<br />
and clinical guidance provided by your doctor and other<br />
health professionals involved in your care.<br />
Don’t forget the MSSANT Client Services Team can<br />
help source trusted articles, links and verify<br />
information for you. Contact MS Assist on 1800 812 311<br />
or msassist@ms.asn.au<br />
1<br />
www.pewinternet.org/files/old-media//Files/Reports/2011/PIP_Health_Topics.pdf<br />
6 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 7
Round-up of research<br />
and other items of interest<br />
Sue Shapland RN, BN<br />
Here we bring you some interesting research updates from<br />
various sites around the world.<br />
Does the month you were born affect your risk of<br />
developing MS?<br />
A large study which included a very detailed survey was<br />
undertaken to determine whether there is a pattern to birth<br />
month for people with multiple sclerosis.<br />
Data from more than 21,000 people with MS in the UK were<br />
included and the study found that people diagnosed with MS<br />
are more likely than average to have been born in April, and<br />
less likely than average to have been born in November.<br />
The results of the study suggest that environmental factors<br />
very early in life contribute to the risk of MS. One of these<br />
factors could be low sunlight exposure during winter<br />
pregnancies, leading to low maternal vitamin D levels which in<br />
some way increase the risk of developing MS later in life. Other<br />
factors such as the mother’s exposure to seasonal infections or<br />
seasonal differences in diet could also play a part.<br />
Comment by authors: Birth month is only one of a number<br />
of environmental factors that could influence the risk of<br />
developing MS. Others include smoking and exposure to<br />
infections, especially Epstein-Barr virus which causes<br />
glandular fever.<br />
Rodríguez Cruz PM, Matthews L, Boggild M, et al.<br />
Are headaches more common during a relapse?<br />
Headaches are more common in<br />
people with MS and this study<br />
investigated if headaches were<br />
more likely to occur during a<br />
relapse than remission.<br />
This study in Iran compared the<br />
reports from 57 people with<br />
RRMS and 57 people without a<br />
neurological condition (controls).<br />
People with MS were questioned during a relapse and again<br />
three months later. It was found that headaches were more<br />
common during a relapse, particularly migraines. However,<br />
headaches were also more common in people with MS<br />
during remission, when compared to the general population.<br />
Nearly 50% of people with MS having a relapse also<br />
experienced a headache compared with 38.6% in remission<br />
and 27.7% in the control group. The most common type of<br />
headache to experience during a relapse was a migraine,<br />
followed by tension headache.<br />
Headaches during a relapse were reported to be severe<br />
and described as compressing. People who had been<br />
diagnosed with MS in the last three years were more likely<br />
to experience a headache during relapse than those who had<br />
been diagnosed for longer.<br />
Togha M, Abbasi Khoshsirat N, Moghadasi AN, et al.<br />
Could Pilates have cognitive<br />
benefits as well as physical?<br />
In the past, people with MS<br />
were advised to avoid exercise<br />
especially activities that might<br />
be tiring. However, a number of<br />
studies have shown that regular,<br />
moderate exercise is a good thing.<br />
Pilates is one of many options<br />
available to stay active.<br />
This study included 20 people with MS, split into two<br />
groups. The first adhered to clinical Pilates and the second a<br />
traditional exercise program for eight weeks.<br />
The study found that both clinical programs improved<br />
performance on some physical tests. Those in the Pilates<br />
group had significant improvements in balance, fatigue<br />
and tiredness and they had greater improvements in their<br />
cognitive symptoms and quality of life when compared to the<br />
traditional exercise group participants.<br />
Küçük F, Kara B, Poyraz EÇ, Idiman. J Phys Ther Sci. <strong>2016</strong><br />
Mar;28(3):761-8. Epub <strong>2016</strong> Mar 31.<br />
Some forms of MS may be hereditary<br />
After many years of saying that MS is not passed down the<br />
generations, new research is now saying the opposite.<br />
Researchers from Canada, led by Prof. Carles Vilariño-Güell,<br />
report they have proven that MS can result from a single genetic<br />
mutation on a gene called NR1H3. This they say produces a<br />
protein that acts as an ‘on-off switch’ for other genes.<br />
Just one in 1,000 people with MS have this specific mutation<br />
according to the researchers. However, the finding uncovers the<br />
biological pathway that leads to the rapidly progressive form of<br />
MS, which accounts for 15% of people with the disease.<br />
The researchers used blood samples from 4,400 people<br />
with MS and 8,600 blood relatives as part of a 20-year<br />
project funded by the MS Society of Canada and the Multiple<br />
Sclerosis Scientific Research Foundation.<br />
They found the mutation in two Canadian families in which<br />
several members lived with a rapidly progressive type of the<br />
disease. In these families, two-thirds of the people with the<br />
genetic mutation developed MS.<br />
Childhood obesity linked to higher risk of MS<br />
A collaboration between researchers from Canada and the<br />
UK has found a causal relationship between obesity and the<br />
risk of developing multiple sclerosis. Several observational<br />
studies suggest that obesity (measured by Body Mass Index<br />
or BMI) in a person’s earlier stages of life is associated<br />
with an increased risk of developing MS. The research also<br />
suggested a relationship between the decrease in vitamin<br />
D levels as a person’s weight increases as a possible<br />
mechanism for the increased risk.<br />
The Progressive MS Alliance Updates<br />
More than 2.3 million people live with MS worldwide; over<br />
one million have progressive MS. Up to 15% are diagnosed<br />
with primary progressive MS. Whilst there have been<br />
advances in understanding other forms of MS, progressive<br />
MS remains difficult to understand and treat.<br />
The International Alliance was set up to focus research<br />
efforts on progressive MS; Australia is represented<br />
through MSRA. Initial funding was allocated for 22 projects<br />
designed to improve understanding of genetic and biological<br />
processes, repurpose existing drugs and speed up clinical<br />
trials. These one to two year research projects began in<br />
2015, and focus on six areas:<br />
• Clinical trials and outcome measures<br />
• Biomarkers of progression<br />
• Gene studies<br />
• Rehabilitation trials<br />
• Underlying pathology of progression<br />
• Developing new disease models<br />
Cancer risk associated with Mitoxantrone<br />
Mitoxantrone is an anti-cancer drug that was sometimes<br />
used to treat active MS. Dosage was limited as it is known<br />
to cause damage to the heart muscles. It is already known<br />
that there is an associated increased risk of cancer. This<br />
study followed a group of German patients for a number<br />
of years. They reported that 5% of people or 1 in 20 got<br />
cancer. Whilst life is associated with a cancer risk, this<br />
appears high and is one of the reasons that use of this agent<br />
has dwindled.<br />
Conclusion: While the overall incidence of malignancies<br />
was only mildly increased, the risk of leukaemia and<br />
colorectal cancer was heightened. If confirmed, post-therapy<br />
colonoscopy could become advisable.<br />
Buttmann M, Seuffert L, Mäder U, Toyka KV. Malignancies<br />
after mitoxantrone for multiple sclerosis: A retrospective<br />
cohort study. Neurology. <strong>2016</strong> Jun 7;86(23):2203-7.<br />
Websites of interest:<br />
MS in children online resources from MSIF<br />
Here you can find information about MS in children and<br />
download a parent’s guide.<br />
Visit: msif.org/about-ms/childhood-ms/<br />
MStranslate<br />
This Australian website seeks to bring together “the wealth<br />
of information on MS in a way that makes it accessible to<br />
every element of the community”.<br />
There are a range of links and summaries of various<br />
research studies including those looking into lifestyle<br />
modification e.g. the multiple benefits of exercise.<br />
They collaborate with a range of Australian researchers<br />
including Professor George Jelinek, head of the<br />
Neuroepidemiology Unit at the University of Melbourne.<br />
Visit: mstranslate.com.au<br />
Read more at:<br />
ms.asn.au/researchupdate<br />
8 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 9
The National Disability<br />
Insurance Scheme (NDIS)<br />
Sue Shapland RN, BN<br />
The NDIS will deliver a life-long approach to support people<br />
with disability using individualised planning processes to<br />
identify the reasonable and necessary supports needed to<br />
enable people living with disability to achieve their goals.<br />
To participate, you need to meet both the age (under 65<br />
years when registering) and residency requirements i.e. you<br />
reside here and are either an Australian citizen, a permanent<br />
resident of Australia, or a New Zealand citizen who is a<br />
Protected Special Category Visa holder.<br />
Your disability needs to be due to one or more intellectual,<br />
cognitive, neurological, sensory or physical impairments,<br />
or due to one or more impairments attributable to a psychiatric<br />
condition and is, or is likely to be, permanent and substantially<br />
reduces your ability to take part effectively in activities without<br />
the support of others and/or aids and equipment.<br />
Roll out in SA<br />
By July 2018, it is expected that 26,000 people in SA<br />
will be accessing the NDIS. Nationally it is expected that<br />
460,000 will be registered with the scheme by 2020 at a<br />
cost of $23 billion.<br />
When the NDIS commences in a region, people currently<br />
receiving supports through South Australian Government<br />
specialist disability services will be moving first.<br />
Existing Commonwealth and state-based services and<br />
supports will continue until eligible people with disability<br />
start their plans with the NDIS.<br />
The NDIS will become available for adults aged 18 to 64<br />
years in:<br />
• Northern Adelaide in the local government areas of the<br />
City of Playford, City of Salisbury and City of Port Adelaide<br />
Enfield (East) local government areas from 1 July 2017.<br />
• Barossa Light and Lower North, from 1 July 2017.<br />
• Barossa Council<br />
• Town of Gawler<br />
• Light Regional Council<br />
• District Council of Mallala<br />
Adults aged 18 to 64 years in the City of Tea Tree Gully<br />
local government area are eligible from 1 October 2017.<br />
Read more, and see the maps on the roll outs,<br />
on the NDIS website:<br />
myplace.ndis.gov.au and click on the SA link.<br />
NDIS NT Update<br />
The NDIS trials commenced in the Barkly region in 2014.<br />
The NDIS will roll out, geographically, across the Northern<br />
Territory over a three-year period, ultimately providing<br />
support to more than 6,500 people. People will move to the<br />
NDIS at different times depending on where they live.<br />
The transition to full scheme commenced on 1 July <strong>2016</strong><br />
with continued roll out in the Barkly region. The Darwin<br />
urban region is due to start rolling in from 1 July 2018.<br />
The MSSANT Client Services team will write to you prior<br />
to your area rolling in to the expanded sites to alert you<br />
to the scheme and how you can register. We have some<br />
information resources that were developed nationally<br />
for people living with MS to help you understand the<br />
terminology and the planning process. We will also conduct<br />
some information sessions where you can chat to the staff<br />
about your queries or concerns.<br />
I have included a couple of case studies from two MSWA Members we have worked with and who have<br />
received funding through the trial sites.<br />
My NDIS Story: Anita G<br />
“Before NDIS/MSWA I was sad, scared, isolated and<br />
lonely. My body and my life were atrophying. My future<br />
looked bleak.<br />
Enter NDIS/MSWA. Immediately my life exploded with<br />
possibilities and potentials. I was nurtured, cared for<br />
and befriended.<br />
Let me list a few of the gifts I have received through the<br />
NDIS/MSWA partnership: railings in my bathroom, pool,<br />
and walkways; physio and OT; a bespoke wheelchair,<br />
designed for me. I now move safely around my home and<br />
in the community.<br />
What greater gift is there other than rekindling my<br />
passion for life.”<br />
Anita<br />
My NDIS Story: Kay<br />
Kay has MS. Her cognitive symptoms cause her<br />
great stress and anxiety. Her NDIS plan included<br />
transdisciplinary access to allow her to maintain<br />
independence and well-being at home and in the<br />
community.<br />
Over the last year with the OT, she has accessed a new<br />
light weight manual wheelchair for independent mobility<br />
within the home and a mobility scooter; for independent<br />
access to the community. Kay is now able to take her<br />
puppy for walks and venture into town without relying on<br />
others for assistance.<br />
The OT also developed in-home strategies to help<br />
manage her cognitive symptoms and to achieve her<br />
goal, “To be able to prepare a meal independently for my<br />
husband and me, one day a week”.<br />
The OT visited her home and worked with her, cooking<br />
her chosen recipe, and developing strategies to support<br />
her. She now prepares a meal for herself and her<br />
husband once a week.<br />
The NDIS allows timely access to funding to meet reasonable and necessary needs and individual outcomes<br />
and this is really making a huge difference. We look forward to full roll out!<br />
MSchievous Bunch<br />
Cooling Vest Grants<br />
By now everyone would have heard about the amazing<br />
group of women called the MSchievous Bunch.<br />
And if you bought their 2015 calendar you would have<br />
seen them as well! Since 2015 they have continued as<br />
community fundraisers, working hard at events such as<br />
‘Car show and shines’, Bunnings bbqs, afternoon teas,<br />
and endless events that have raised over $17,000.<br />
The MSchievous Bunch want this money to be used to<br />
help as many people with MS as possible and one way to<br />
do this is to help people stay cool. We all know that for<br />
the majority of people with MS overheating is one of the<br />
worst things that can happen – fatigue levels skyrocket<br />
and MS symptoms worsen. The Arctic Heat cooling vest<br />
is a proven way of controlling body temperature, allowing<br />
users to exercise, garden or just continue with normal<br />
life, even when the weather is warm.<br />
The Cooling Vest grant will subsidise the cost of an<br />
Arctic Heat cooling vest, successful applicants will<br />
only need to pay $50 to obtain a new vest, in time<br />
for the heat of summer. In August, 15 people were<br />
successful in applying for a cooling vest grant, and now<br />
have their vests. The MSchievous Bunch want to extend<br />
this opportunity to another 50 people with MS.<br />
Applications must be received by 31 October.<br />
Successful applicants will need to pay a $50<br />
contribution before orders can be placed.<br />
For an application form and more information,<br />
contact MS Assist on 1800 812 311 or email<br />
msassist@ms.asn.au<br />
10 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 11
Overview on<br />
type 2 diabetes<br />
Limit foods high in energy such as takeaway foods, sweet<br />
biscuits, cakes, sugar sweetened drinks and fruit juice,<br />
lollies, chocolate and savoury snacks. Some people have a<br />
healthy diet but eat too much. Reducing your portion size is<br />
one way to decrease the amount of energy you eat. Being<br />
active has many benefits. Along with healthy eating, regular<br />
physical activity can help you to manage your blood glucose<br />
levels, reduce your blood fats (cholesterol and triglycerides)<br />
and maintain a healthy weight.<br />
Exercise<br />
Everybody benefits from regular exercise. For people<br />
who have diabetes, or are at risk of diabetes, it plays an<br />
important role in keeping them healthy.<br />
For a person with diabetes, exercise helps:<br />
• insulin to work better, which will improve your diabetes<br />
management;<br />
• maintain a healthy weight;<br />
• lower your blood pressure;<br />
• reduce your risk of heart disease; and<br />
• reduce stress.<br />
Type 2 diabetes is a progressive condition in which the body<br />
becomes resistant to the normal effects of insulin and/or<br />
gradually loses the capacity to produce enough insulin in the<br />
pancreas. We do not know what causes type 2 diabetes,<br />
but it is associated with several modifiable lifestyle risk<br />
factors. Type 2 diabetes also has strong genetic and family<br />
related risk factors.<br />
It is diagnosed when the pancreas does not produce enough<br />
insulin (reduced insulin production), the insulin does not<br />
work effectively, and/or the cells of the body do not respond<br />
to insulin effectively (known as insulin resistance).<br />
Type 2 diabetes represents 85 to 90 percent of all cases<br />
of diabetes. It usually develops in adults over the age of 45<br />
years but is increasingly occurring in younger age groups<br />
including children, adolescents and young adults. It is more<br />
likely in people with a family history of type 2 diabetes or<br />
from particular ethnic backgrounds.<br />
For some people the first sign may be a complication<br />
of diabetes such as a heart attack, vision problems<br />
or a foot ulcer.<br />
Type 2 diabetes is managed with a combination of regular<br />
physical activity, healthy eating and weight reduction. As<br />
type 2 diabetes is often progressive, most people will need<br />
oral medications and/or insulin injections in addition to<br />
lifestyle changes over time.<br />
What happens with type 2 diabetes?<br />
Type 2 diabetes develops over a long period of time.<br />
During this period, insulin resistance starts and this is<br />
where the insulin is increasingly ineffective at managing the<br />
blood glucose levels. As a result of this insulin resistance,<br />
the pancreas responds by producing greater and greater<br />
amounts of insulin to try and achieve some degree of<br />
management of the blood glucose levels.<br />
As this over production of insulin occurs over a very long<br />
period of time, the cells in the pancreas that produce<br />
insulin wear themselves out, so that by the time someone<br />
is told that they have type 2 diabetes, they have lost<br />
50-70% of those insulin producing cells. This means that<br />
type 2 diabetes is a combination of ineffective insulin and<br />
not enough insulin. It is a progressive condition and the<br />
progression is related to the ongoing destruction of the<br />
cells in the pancreas that produce insulin.<br />
Type 2 diabetes can often initially be managed with healthy<br />
eating and regular physical activity. However, over time most<br />
people with type 2 diabetes will also need tablets and many<br />
will also need insulin. It is important to note that this is just<br />
the natural progression of the condition, and taking tablets<br />
or insulin as soon as they are required can result in fewer<br />
long term complications.<br />
What causes type 2 diabetes?<br />
There is no single cause of type 2 diabetes, but there are<br />
well established risk factors. Some of the risk factors can be<br />
controlled and others people are born with. People are at a<br />
higher risk of getting type 2 diabetes if they:<br />
• have a family history of diabetes;<br />
• are older (i.e. over 55 years of age) as the risk increases<br />
as we age;<br />
• are over 45 years of age and overweight;<br />
• are over 45 years of age and have high blood pressure;<br />
• are over 35 years of age and are from the Pacific Islands,<br />
the Indian subcontinent or Chinese cultural background; and<br />
• have given birth to a child over 4.5 kg, had<br />
gestational diabetes when pregnant, or have<br />
Polycystic Ovarian Syndrome.<br />
Symptoms<br />
In type 2 diabetes many people have no symptoms at all.<br />
As type 2 diabetes is commonly, but not always, diagnosed<br />
at a later age, signs are sometimes dismissed as a part of<br />
getting older. In some cases, by the time type 2 diabetes is<br />
diagnosed, the complications of diabetes may already be<br />
present. Symptoms include:<br />
• being excessively thirsty<br />
• passing more urine<br />
• feeling tired and lethargic<br />
• always feeling hungry<br />
• having cuts that heal slowly<br />
• itching / skin infections<br />
• blurred vision<br />
• gradually putting on weight<br />
• mood swings<br />
• headaches<br />
• feeling dizzy<br />
• leg cramps<br />
Eating Well<br />
Healthy eating and an active lifestyle are important for<br />
everyone, including people with diabetes. Having a healthy<br />
diet and being active is an important part of managing<br />
diabetes because it will help manage the blood glucose<br />
levels and body weight.<br />
Meals that are recommended for people with diabetes are<br />
the same as for those without diabetes; there is no need to<br />
prepare separate meals or buy special foods.<br />
Everyone including family and friends can enjoy the<br />
same healthy and tasty meals together. As a guide, it is<br />
recommended people with diabetes follow the Australian<br />
Dietary Guidelines - Healthy Eating for Adults and Children.<br />
What should be eating?<br />
Eating the recommended amount of food from the five food<br />
groups will provide you with the nutrients you need to be<br />
healthy and prevent chronic diseases such as obesity and<br />
heart disease.<br />
To help manage your diabetes:<br />
• Eat regular meals and spread them evenly throughout<br />
the day<br />
• Eat a diet lower in fat, particularly saturated fat<br />
• If you take insulin or diabetes tablets, you may need<br />
to have between meal snacks<br />
• It is important to recognise that everyone’s needs are<br />
different. For individualised advice, all people with<br />
diabetes should see an Accredited Practicing Dietitian<br />
in conjunction with their diabetes team.<br />
Energy balance<br />
Matching the amount of food you eat with the amount of<br />
energy you burn through activity and exercise is important.<br />
Putting too much fuel in your body can lead to weight gain.<br />
Being overweight or obese can make it difficult to manage<br />
your diabetes and can increase the risk of heart disease,<br />
stroke and cancer.<br />
Taking care of the feet<br />
Ulcers or other lesions on the feet are a serious danger for<br />
people with diabetes. It is important to avoid foot damage<br />
especially for middle-aged and elderly people.<br />
It is important to:<br />
• always inspect your feet before and after exercise<br />
• avoid exercise that causes stress to the feet (e.g. running)<br />
Exercise which poses minimal weight or stress on the feet<br />
is ideal i.e. riding an exercise bike or brisk walking in good<br />
footwear. Wear comfortable and well-fitting shoes. See a<br />
podiatrist for foot care and advice.<br />
Maintaining a healthy weight<br />
One of the most important aspects of diabetes management<br />
is to maintain a healthy body weight. Being overweight not<br />
only increases the risk of heart disease, stroke and some<br />
cancers, it also makes diabetes harder to manage. Small<br />
changes in diet such as reducing portion sizes and swapping<br />
to low fat dairy products, can help to achieve a healthy body<br />
weight and manage diabetes.<br />
A small weight loss (5-10% of body weight) can make a big<br />
difference to diabetes management and, as a consequence,<br />
reduce the risk of developing complications like heart<br />
disease, stroke and some cancers. If there is a risk of<br />
pre-diabetes (impaired fasting glucose or impaired<br />
glucose tolerance), losing 5-10% of a person’s current body<br />
weight can prevent type 2 diabetes in up to nearly 6 out of<br />
10 people.<br />
Article Credits:<br />
Diabetes Australia<br />
Dee Lucey, Community Access Nurse<br />
12 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 13
Five tips for getting a mental<br />
health boost for people with MS<br />
Lisa Marshall<br />
Purchasing equipment?<br />
We recommend you speak to an OT first!<br />
Multiple sclerosis is a condition that affects approximately 2.5 million people worldwide. It is by no means a rare<br />
condition, yet it can make daily life stressful and overwhelming. Maintaining mental health is very important for all<br />
people but may be even more so for those with a physical ailment. Here are some ways to help improve your mental<br />
health and positive outlook when you’re living with multiple sclerosis.<br />
1<br />
2<br />
3<br />
Find a support network<br />
When no one around you truly understands what it’s<br />
like to have MS, your mental well-being can suffer.<br />
Finding an MS support group puts you in contact with<br />
people who may have been dealing with the effects<br />
of MS longer than you, or are experiencing similar<br />
challenges. These groups offer advice, support, and<br />
empathy which can be hard to find in loved ones who<br />
do not fully understand the impact of MS.<br />
Support groups do not necessarily have to meet in<br />
person. With the unlimited connections the Internet<br />
provides, online support groups are also a suitable and<br />
equally beneficial alternative for many people who are<br />
living with this ailment.<br />
Meditate regularly<br />
Meditation has been shown to both improve mental<br />
health and lessen chronic pain. Additionally, regular<br />
meditation can result in a more positive outlook and<br />
decreased stress levels. Learning to meditate without<br />
guidance can be a challenge, but with the rise of<br />
meditation in mainstream culture, it’s likely you have<br />
a knowledgeable instructor near you. You can also<br />
turn to online guided tutorials to learn how to meditate<br />
properly from the comfort of your home.<br />
Find a form of exercise that works for you<br />
Though exercise with MS can prove difficult, simply<br />
being outdoors can improve your mindset. If possible,<br />
exercise provides added endorphins which have been<br />
shown to benefit mood. Even mild exercise such as<br />
a relaxed hike along a well-kept trail will work as an<br />
excellent mental health break. It’s difficult to be negative<br />
when surrounded by beautiful scenery, particularly if you<br />
make outings a part of your regular routine.<br />
Another great form of exercise for people with MS is<br />
swimming. Spending some time in the pool, whether<br />
you’re doing leisurely-paced laps or water walking,<br />
provides a great cardio workout while being easy on<br />
the joints.<br />
Play games for your memory<br />
Memory loss is a fairly common symptom of MS,<br />
which can be both debilitating and frustrating. The<br />
ability to recall information is a key component to<br />
independence, which is something no one wants to<br />
lose. Playing games meant to maintain memory can<br />
help eliminate the aggravation of forgetfulness.<br />
Remember the positives in your life<br />
Making a list of things you love, appreciate, and are<br />
grateful for can be a useful prop for bad days. Taking<br />
the time to remember how many things you have to be<br />
happy about is often one of the most mentally helpful<br />
activities a person can do. Pin the list somewhere<br />
you see it regularly and don’t be afraid to add to it.<br />
Positivity plays an enormous role in mental health<br />
and while it can be difficult to maintain, having a<br />
physical reminder or motivation, like a list, can help.<br />
Some studies are even showing that a positive outlook<br />
can improve your physical health alongside your<br />
mental wellbeing.<br />
Giving in to frustration can be easy, but remembering<br />
to care for your mental health and overall well-being<br />
is an important part of living. MS may mean more<br />
physical difficulties but it does not have to affect your<br />
mental health. With support, beneficial routines, and a<br />
positive outlook, you can live a more fulfilling life.<br />
Lisa Marshall wanted to start AussieWell.net after meeting some of her long-distance online friends on a trip. Being from<br />
the States, they had a lot of ‘typical’ questions about living in Australia, and so Lisa decided to provide a newcomer’s<br />
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,<br />
she continues to think about the safety, wellness, and overall lifestyle advice she can spread to Aussies and their visitors.<br />
Online resources: artofliving.org/au-en/benefits-meditation-0<br />
intheswim.com/eGuides/burning-calories-in-the-pool<br />
4<br />
5<br />
A large part of an occupational therapist’s (OT) work<br />
is providing information, doing assessments and<br />
recommending and prescribing the correct equipment<br />
to match the individual’s needs.<br />
The wide range of equipment includes chairs and seating,<br />
rails and ramps, aids in the kitchen and bathroom, beds,<br />
computer access, scooters and so on. Every assessment is<br />
unique and correct prescription makes all the difference.<br />
To make a good selection, it is advantageous to know<br />
what equipment options are available and what different<br />
suppliers stock.<br />
Clients and their carer or family need to be involved in the<br />
equipment assessment and selection process because<br />
they know what they require the equipment for, and how<br />
it will be used. It is this working together that leads to the<br />
best outcome.<br />
Funding of equipment is a separate issue to the assessment<br />
and selection of equipment. Funding bodies have different<br />
criteria on grant eligibility, which is usually based on income.<br />
Clients who are not eligible for these funding grants often<br />
feel alone, and disappointed, when it comes to accessing<br />
equipment. The National Disability Insurance Scheme (NDIS)<br />
subject to eligibility criteria, will hopefully resolve many of<br />
these issues for Clients as it rolls out in the future.<br />
Accessible vehicle for trade<br />
An MSSANT Client is offering to trade their specially modified car to<br />
a person with a use for it. Uwe and his wife have lived with MS for<br />
over 30 years and would like to help someone else with MS.<br />
Uwe lives in North East Adelaide. He owns a 2004 Toyota Porte,<br />
similar to the photograph. It has the side sliding door with the<br />
front seat turning and coming out for ease of access into the car.<br />
It is in good condition with full registration and insurance.<br />
Uwe does not want to sell his car; he would like to exchange it for<br />
another vehicle as he wants to give the car to a struggling friend.<br />
He would ideally like to trade his car with someone in need of it<br />
for a ‘non-modified’ car, preferably an automatic.<br />
If you are interested and need a special car for transport, please<br />
call Uwe on 8261 9298 or 0435 668 131 to discuss his offer.<br />
We also occasionally meet Clients who have spent a<br />
lot of time and money on equipment but have not made<br />
a good selection, based on their needs.<br />
Our OTs can provide information, assessment and<br />
recommendations to Clients and their families even<br />
when the equipment will need to be self-funded.<br />
We would like to help you get it right and to save<br />
you from unnecessary expense and frustration.<br />
Contact the MSSANT Occupational Therapy Team via<br />
MS Assist on on 1800 812 311 or msassist@ms.asn.au<br />
14 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 15
Workplace Solutions<br />
Hannah’s story<br />
Dietary information<br />
Workplace Support Consultant,<br />
Michele.<br />
Hannah’s story is an excellent example of why we<br />
provide support within the Workplace Solutions team and<br />
demonstrates the various types of support that are provided<br />
to help someone return to work and maintain employment.<br />
Her story is a true testament to the quality service Michele<br />
provides on a daily basis.<br />
“My life was turned upside down last September when I<br />
was diagnosed with MS. I went from being a completely<br />
independent, strong, full-time working mother of two<br />
toddlers, to someone who needed help on a daily basis.<br />
I had woken up one morning with pins and needles<br />
throughout the left side of my body. My left hand struggled<br />
to function the way it once did and my walking had<br />
deteriorated to a slow crawl.<br />
After hopping through a selection of medications,<br />
it was time for me to return to work after what felt like<br />
a lifetime away.<br />
The thought of returning to work was daunting, but I was<br />
lucky enough to have the guidance of Multiple Solutions.<br />
Michele, my Workplace Support Consultant, attended<br />
meetings with my doctor and my workplace. Michele<br />
helped explain to my workplace what MS is, and what help<br />
I required in order to get back to my full capacity. Having<br />
a professional third party there made this a very smooth<br />
process, as Michele also organised all my return to work<br />
plans. I was also fortunate to receive a new chair and<br />
keyboard to assist in my pain and fatigue management.<br />
Suddenly the prospect of returning to work was made<br />
a lot easier, and slowly I am getting back to my old<br />
independent self.<br />
Now I keep in regular contact with Michele, which is<br />
reassuring to knowing there is help there if I need it.<br />
Michele has removed the stress from an overwhelming<br />
situation, and I am forever grateful for all she has done for<br />
me. I really hope anyone who needs help getting back to<br />
work reaches out to Multiple Solutions, you won’t regret it!”<br />
Hannah<br />
Share your MS experience in an eBook<br />
The MSSANT Client Services staff are regularly asked<br />
questions about diet and what types of food should be eaten<br />
when a person has MS. Staff can guide you to booklets and<br />
websites but here are some responses from ‘the experts’.<br />
MS Research Australia, July <strong>2016</strong><br />
“There is certainly much to be said for a healthy diet<br />
containing high levels of fresh foods, avoiding too much<br />
processed food and ensuring that we get a wide range of<br />
essential nutrients.<br />
However there have been no clinical studies done to confirm<br />
that adhering to any particular diet can cure or halt the<br />
progression of MS in a majority of people with MS. There<br />
is a great deal of interest in the role that diet may play in<br />
the development and also the management of MS, however<br />
direct scientific evidence for particular nutrients and for<br />
specific diet regimes is lacking.<br />
MS Research Australia proactively funds a great deal of<br />
innovative research into diet and we work closely with the<br />
researchers and neurologists with expertise in all areas of<br />
MS research to ensure that the many promising avenues for<br />
improving the lives of people with MS are explored.”<br />
More information is available from MS Research<br />
Australia. Visit their website at msra.org.au<br />
We then spoke to Menu Concepts. Their dietitian Lauren<br />
Stribley has spoken at some of our MS information<br />
sessions and to peer support groups. Menu Concepts<br />
understand the needs of people with MS and their key<br />
recommendations are:<br />
• Follow a healthy, well-balanced diet<br />
• Maintain a healthy weight<br />
• Meet vitamin and mineral requirements<br />
• Include healthy fats in your diet<br />
• Consider how and when you eat<br />
Where to go for personalised information?<br />
Chronic Disease Management Plans are available for people<br />
with MS and can cover five visits per year to a dietitian.<br />
These plans include Medicare bulk billed visits to allied<br />
health professionals arranged by your GP. Those with private<br />
health insurance may prefer a self-referral with a 50 to 80%<br />
refund from a health fund.<br />
Menu Concepts have centres throughout Adelaide.<br />
Visit their website for more information<br />
menuconcepts.com.au<br />
A group of Clients would like to publish a personal story<br />
eBook to help others diagnosed with MS feel that they<br />
are not alone. The group is in search of personal stories<br />
and testimonies from people living with MS. They could<br />
possibly share their experiences and how they manage<br />
their symptoms on a day to day basis.<br />
The eBook would read rather like a social media forum,<br />
where someone who is experiencing a symptom puts up<br />
a post and others respond. There will be various topical<br />
chapters the reader could refer to and hopefully find<br />
something they can relate to that will help them deal with<br />
their own situation. As well as symptoms, other topics<br />
could include telling family, friends and work colleagues;<br />
working with MS; rural living and the challenges faced;<br />
and relationships. A chapter written by family and friends<br />
of people with MS could also be included. Each chapter<br />
will include comment from an MSSANT staff member to<br />
provide a balance of information.<br />
The privacy and<br />
confidentiality of<br />
contributors is ensured.<br />
All funds raised from the<br />
sale of the eBook will go<br />
to the MS Society of<br />
SA & NT to support<br />
Client services.<br />
For the book to be<br />
written, we need<br />
to hear your story.<br />
Please consider what<br />
you would like to share and what you would like<br />
to read. If you wish to register your interest,<br />
please contact MS Assist on 1800 812 311 or email<br />
msassist@ms.asn.au and more information<br />
will be sent to you.<br />
Are you a woman living with<br />
multiple sclerosis?<br />
I am interested in finding out about your relaonships with<br />
health professionals.<br />
I am undertaking a research study which aims to explore the<br />
paent-health professional relaonship from the<br />
perspecve of women with mulple sclerosis.<br />
I would like to speak with women over 18 years of age, who live in<br />
metropolitan Adelaide and who have been diagnosed with<br />
mulple sclerosis for longer than 12 months.<br />
Parcipaon in this study would involve a one hour interview, at a<br />
me and locaon of your choosing.<br />
Interested in parcipang?<br />
16 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory Want more informaon? The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 17<br />
Please contact Tracey Obst Tel: 0402 072 254
Peer Support<br />
Join a support group and talk to others who understand.<br />
What is a Peer Support Group?<br />
A Peer Support Group is a gathering of people with MS.<br />
The purpose of the group is to provide support to<br />
each other and to share information by:<br />
• learning more about MS;<br />
• sharing feelings and experiences;<br />
• obtaining accurate information;<br />
• providing an opportunity to talk through problems<br />
or choices being faced;<br />
• listening to others who share similar feelings<br />
and experiences;<br />
• helping others through the sharing of ideas and<br />
information; and<br />
• knowing they are not alone.<br />
New Peer Support Groups<br />
Singing group<br />
Even if you can only sing in the shower, here is an<br />
opportunity to develop your vocal skills while enjoying some<br />
great company. Deborah Munro, the Music Director of<br />
Illumina Voices and previous Artistic Director of the award<br />
winning Young Adelaide Voices, will lead a session<br />
of singing, fun and friendship.<br />
The first session was held on 26 August and there was a<br />
mixture of youth and maturity, male and female, in tune and<br />
learning, and enjoyment for all.<br />
This group is for people living with MS and their carers, and<br />
is open to both men and women. Sessions will be held in<br />
the early afternoons during the week at the Mitcham Uniting<br />
Church and will be followed by afternoon tea.<br />
Please call MS Assist on 1800 812 311 or email<br />
msassist@ms.asn.au for details of the next session.<br />
Tai Chi classes in the mid-north<br />
A Tai Chi instructor, with 20 years of teaching experience, is<br />
running classes for people with MS living in mid-north SA.<br />
Classes are held during school terms and activities can<br />
be performed seated or standing. The cost will be a gold<br />
coin donation.<br />
Classes have commenced at:<br />
Clare on Monday afternoons<br />
4.30pm at St Joseph’s School Hall<br />
Kapunda on Tuesday evenings<br />
7.30pm at Uniting Church Hall<br />
Please call MS Assist on 1800 812 311 or<br />
msassist@ms.asn.au, if you would like more information<br />
or if you would be interested in Tai Chi class in Gawler<br />
or Hamley Bridge.<br />
Facebook online support groups<br />
MySociety<br />
This is an online Facebook group for people living with MS<br />
in SA & NT. This is a private place to chat, only people in<br />
the group will be able to read posts. It is a closed forum,<br />
only accessible to members from South Australia and the<br />
Northern Territory.<br />
To protect the confidentiality of MySociety members, the<br />
group has been set up as a private group. If you would like<br />
to join the group, please send an email to msassist@ms.asn.<br />
au to request membership.<br />
MySociety - Family and Friends<br />
A Facebook group for family, friends and carers of people<br />
living with MS. This is a private place to chat, share<br />
information and connect with others who are supporting<br />
someone with MS. It has been created, and is administered<br />
by the MS Society of SA & NT. As it is set up as a private<br />
group, only people in the group will be able to read posts.<br />
Request membership at facebook.com/<br />
groups/1388437131394906/<br />
Peer support groups meet in the following areas:<br />
(Family members and carers are welcome)<br />
If there have been any changes to your support group that we’re not aware of, please contact the<br />
MS Society to advise us of any updates.<br />
REGION WHEN LOCATION CONTACT<br />
Adelaide Hills –<br />
Mount Barker<br />
Barossa<br />
Broken Hill<br />
City based for workers<br />
Clovelly Park<br />
Copper Triangle<br />
Darwin<br />
Fleurieu<br />
Gawler<br />
3rd Monday of each month,<br />
6.30pm<br />
3rd Thursday of each month,<br />
11am<br />
Sundays,<br />
11am bi-monthly<br />
2nd weekend of every month<br />
alternating Friday nights/<br />
Saturday brunch<br />
4th Friday of each month,<br />
12pm<br />
1st Wednesday of each month,<br />
11am<br />
Various<br />
12pm<br />
Random Tuesdays<br />
at 12.30pm<br />
2nd Monday of each month,<br />
10am<br />
Auchendarroch Tavern,<br />
Mount Barker<br />
Tanunda/Nuriootpa<br />
Gloria Jean’s Coffee,<br />
Bromide St<br />
Various city locations<br />
Tonsley Hotel<br />
Various venues<br />
Various venues<br />
Rotated around Fleurieu eateries<br />
Gawler Women's Health Centre<br />
David<br />
0410 451 301<br />
Penny<br />
0488 952 211<br />
MS Assist<br />
1800 812 311<br />
Jess<br />
0403 155 696<br />
Christine Sutherland<br />
(08) 8276 3779<br />
Allan<br />
0498 386 949<br />
Sarah<br />
0439 885 604<br />
Jill<br />
0428 843 327<br />
Helen Hoppmann<br />
0403 295 348<br />
Gawler evening group Various Various venues Helen Hoppmann<br />
0403 295 348<br />
Hard Yakkas<br />
(Salisbury)<br />
Kapunda<br />
Kensington<br />
(Overcoming MS group)<br />
Modbury<br />
Mount Gambier<br />
Noarlunga<br />
Port Lincoln<br />
Port Pirie<br />
Riverland<br />
South East Support<br />
Group<br />
Last Thursday of each month,<br />
12pm<br />
2nd Tuesday of each month,<br />
6.30pm<br />
3rd Monday of each month,<br />
6.30pm<br />
Last Tuesday of each month,<br />
10am<br />
1st Friday of each month,<br />
1pm<br />
1st & 3rd Thursday of<br />
each month, 12.30pm<br />
2nd Tuesday of each month,<br />
4.30pm<br />
2nd Wednesday of each month,<br />
12pm<br />
1st Tuesday of each month,<br />
10am<br />
3rd Thursday of each month,<br />
10.30am<br />
Sabine's Cafe & Bakehouse,<br />
Parabanks shopping centre<br />
Various venues<br />
Various venues in Norwood area<br />
Independent Living Centre,<br />
Gilles Plains<br />
Various hotels in Mount Gambier<br />
Various lunch venues<br />
Various venues<br />
Port Football Club,<br />
Port Pirie<br />
The Big River Golf Club,<br />
Berri, and other venues<br />
Lutheran Church Hall,<br />
Naracoorte<br />
Tallia Coulter<br />
0403 766 157<br />
Pauline<br />
0427 010 754<br />
Pam Schartner<br />
(08) 8331 9360<br />
Gary Griffiths<br />
(08) 8263 7760<br />
Len Stidwill<br />
0403 218 971<br />
Jude Brown<br />
(08) 8322 5441<br />
Rick Cunningham<br />
0429 977 082<br />
Anne<br />
0448 321 610<br />
Crystal<br />
0418 690 013<br />
Kay Cavill<br />
0407 615 118<br />
Tailem Bend Wednesdays, mid-monthly Various venues Sue Griffiths<br />
(08) 8572 3914<br />
Under 35s<br />
(and a bit older)<br />
Western Suburbs<br />
2nd Monday of each month,<br />
6.30pm<br />
Last Tuesday of each month,<br />
10am<br />
Various venues,<br />
north of the city<br />
Various venues<br />
Nicole<br />
0417 003 547<br />
Enza<br />
0433 972 312<br />
18 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 19
Information<br />
Sessions <strong>2016</strong><br />
The MS Society of SA & NT provide a series of education programs focused on maintaining a healthy lifestyle<br />
and keeping you up to date with latest information and research. These programs are free to Clients and<br />
their family and friends.<br />
Registration is essential. Confirmation letters are provided 1-2 weeks before each seminar or workshop.<br />
If you do not receive a letter/email confirmation for a session you had planned to attend, please notify<br />
MS Assist on 1800 812 311 or email msassist@ms.asn.au. At the time of printing, the dates, times and<br />
venues are current however details may need to be changed. Please ensure you check details when registering.<br />
Client Christmas/end of year celebration<br />
A generous grant will allow the return of the Client Christmas lunch – an opportunity for Client members to come<br />
together to enjoy a meal, some entertainment and have a special day out. The finer details are still being put together,<br />
but the arrangements for the SA lunch are below. A Christmas lunch will also be provided for our NT Clients in Darwin,<br />
invitations for this will soon be posted.<br />
Date: Monday, 12 December <strong>2016</strong><br />
Time: 11.30am to 2.30pm<br />
Venue: Klemzig Community Hall, 242 North East Road Klemzig<br />
RSVP: Bookings are essential. Please RSVP by Wednesday, 30 November to<br />
MS Assist on 1800 812 311 or msassist@ms.asn.au<br />
This is a new facility alongside the OG Hotel and Gaza Oval. There is plenty of parking available.<br />
The hall is air conditioned and surrounded by parks and an amazing children’s playground.<br />
Drinks and a two course meal will be served while you enjoy some delightful music.<br />
The lunch is provided for MSSANT Clients, their children and an accompanying adult.<br />
Additional guests are welcome but there will be a $10 cover charge.<br />
Leaving a gift of hope<br />
Remembering the MS Society in your Will<br />
Leaving a gift in your Will is one of the most powerful ways to be sure<br />
that the Multiple Sclerosis Society of SA & NT is able to continue to<br />
provide vital support and services to those living with MS, and fund<br />
research into the cause and cure.<br />
For more information on how to leave a gift to the MS Society in your Will,<br />
please contact our Planned Giving Manager.<br />
08 6454 3168<br />
bequests@ms.asn.au | ms.asn.au<br />
Darwin News<br />
MSSANT Client Forums in October<br />
MSSANT staff will be visiting Darwin to meet with Clients and to provide MS awareness training to<br />
local health providers. Clients and their families are invited to attend all or some of the information<br />
sessions offered and there will be time for individual discussions with MSSANT staff. Clients will<br />
also be able to meet new MSSANT CEO Helen McLean.<br />
MONDAY, 24 OCTOBER<br />
Palmerston Library Community Room<br />
9.30am to 11.30am – Information session<br />
Topics to be discussed:<br />
• MS OT and Sleep Adviser Bel Cobcroft –<br />
‘Sleep and MS – implications and strategies for improvement’<br />
• MS Nurse Helen McCarl –<br />
‘Symptom management – medical, exercise and diet’<br />
11.30am to 1.30pm – Lunch and time with MSSANT staff<br />
Gray Community Hall, Palmerston<br />
2.30pm to 5.00pm – Time to meet with MS staff<br />
6.00pm to 8.00pm – Information session<br />
Topics to be discussed:<br />
• Solicitor Tom Cobban –<br />
‘Planning for your future – workplace insurances<br />
and superannuation; workplace rights and entitlements’<br />
• ‘Government supports and benefits, Commonwealth and NT’<br />
TUESDAY, 25 OCTOBER<br />
Lyons Community Centre<br />
10.00am to 3.00pm – Time to meet with MS staff<br />
4.00pm to 6.00pm – Discussion group<br />
Topics to be discussed:<br />
• MS Nurse Helen McCarl –<br />
‘Information for the newly diagnosed’<br />
Invitations will be sent to all Darwin clients with further details of forum<br />
and booking arrangements for individual appointments.<br />
Please mark your diaries and spread the word.<br />
Further information on these events can be found on the MSSANT website, in the monthly<br />
e-newsletter Vitality and MySociety Facebook group. For more information, call MS Assist on 1800 812 311.<br />
20 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 21
Self-compassion:<br />
Our greatest ally<br />
Simon Rolph, Counsellor<br />
Compassion cannot cure multiple sclerosis (MS). There we<br />
go. I’ve stated the obvious; but with expectations now set<br />
realistically low, I will now explain why compassion can<br />
be one of our most powerful allies in our response to a<br />
diagnosis like MS.<br />
Paul Gilbert is a British psychologist, university professor,<br />
founder of compassion focused therapy, and author of<br />
books such as The Compassionate Mind. So it’s safe to say<br />
he knows a little bit about compassion. Paul defines the<br />
essence of compassion as “a basic kindness, with deep<br />
awareness of the suffering of oneself and of other living<br />
things, coupled with the wish and effort to relieve it”.<br />
I’ll start off by addressing the deep awareness of suffering.<br />
I am guessing that if you are reading this you either have an<br />
MS diagnosis or know someone with one. If so, you will be<br />
all too aware of the impact a diagnosis of MS can have with<br />
the potential for emotional pain, physical pain, grief and loss.<br />
Take away the reality of living with MS and we still live in a<br />
world full of suffering. Read a newspaper or watch the news<br />
on any given day and you will witness ongoing tragedy and<br />
pain. Given the world we live in and the hard truth of living<br />
in a body that is susceptible to disease and illness, suffering<br />
is an inevitability. Throw in a highly complex but tricky<br />
brain that has the capability of producing a range of painful<br />
thoughts and feelings, and suffering is but one painful<br />
memory away from being a reality.<br />
Fortunately, it isn’t all doom and gloom. As soon as we are<br />
able to recognise and become aware of our own suffering,<br />
we have choice of how we want to respond. So much of<br />
our lived experiences are out of our control; the world we<br />
are born into, the genes we inherit, the autoimmune<br />
diseases we can develop, but we still have choice of how<br />
we can respond.<br />
Holocaust survivor and author of “Man’s search for<br />
Meaning” Viktor E. Frankl famously said:<br />
“Everything can be taken from a man but one thing: the last<br />
of the human freedoms – to choose one’s attitude in any<br />
given set of circumstances, to choose one’s own way.”<br />
This last human freedom provides us with the choice to try<br />
and relieve our suffering with compassion, with kindness. So<br />
what does this look like in real life?<br />
One of the most common MS symptoms is fatigue and<br />
in my role as a counsellor I have had the opportunity to<br />
listen and witness a range of responses to this symptom.<br />
These have included frustration towards the limitations<br />
of fatigue, feelings of guilt towards reduced capabilities,<br />
beating themselves up (metaphorically) as a result of<br />
reduced capabilities, pushing beyond their capabilities<br />
with the consequence of exhaustion, and fear of the future<br />
implications of fatigue. Does any of this sound familiar?<br />
Replace fatigue with physical pain, change in mobility or<br />
cognitive changes and many of the described experiences<br />
are still potentially relevant. Frustration, guilt, fear,<br />
self-criticism and many more painful thoughts and feelings<br />
have the ability to show up.<br />
All of these responses are entirely normal and natural and<br />
there is nothing we can do to stop them from showing up<br />
from time to time. However, getting caught up in these<br />
painful thoughts and feelings is often unhelpful and can<br />
actually contribute to further suffering.<br />
A compassionate alternative then is to recognise our initial<br />
response to a symptom such as fatigue (or any form of<br />
suffering), and choose to offer ourselves some kindness.<br />
Rather than beating ourselves up with self-criticism, offer<br />
some words of comfort and support. Rather than push<br />
beyond our capabilities, allow ourselves to have a break and<br />
perhaps a shift in expectation. Rather than getting caught up<br />
in frustration, guilt and fear, acknowledge the presence of<br />
these painful emotions and do something kind and helpful.<br />
This could be something as simple as taking a few deep<br />
breaths, having a glass of water, going for a walk, making<br />
contact with someone who is important to you.<br />
Self-compassion can look very different depending on<br />
the context and isn’t always warm and fuzzy. Sometimes<br />
being compassionate towards ourselves is making the<br />
hard choice; not eating that very tasty chocolate bar but<br />
instead going out in bad weather to get some exercise.<br />
Sometimes it is quitting a job to allow for a new start,<br />
leaving a bad relationship or making painful sacrifices for<br />
long term benefit.<br />
We have many different relationships, whether with friends<br />
or family but the most important relationship we have is with<br />
ourselves. We are constantly in our own company and at<br />
some point we all experience pain. At that point we have a<br />
choice. We can criticise ourselves, beat ourselves up, react<br />
in an unhelpful way. Or we can recognise our suffering, offer<br />
ourselves some support and kindness and be our own best<br />
friend. Neither will change the initial cause of the suffering<br />
but depending on the approach, the experience itself can be<br />
vastly different.<br />
Being compassionate towards ourselves can be<br />
challenging. Maybe we haven’t had much practice at<br />
being self-compassionate. Maybe we have a belief that<br />
kindness and compassion are a sign of weakness. Maybe<br />
we believe that self-criticism can be motivating and to<br />
be honest, it can be at times. But take a moment and<br />
imagine having a donkey to carry your goods to market<br />
(trust me, this is relevant).<br />
For your career as a trader to succeed, you need your<br />
donkey to transfer your products on a daily basis. How do<br />
you do this? Well, you could whip the donkey and cause pain<br />
as motivation to move forward. Or you could dangle a carrot<br />
in front of the donkey, offer support, encouragement and<br />
kindness and reward your trusty steed when you arrive at<br />
the market. Either of these approaches can get the desired<br />
result but in the long term the punished donkey will likely<br />
feel anxious, depressed, have no desire to be loyal and<br />
ultimately lead a rather unhappy existence. The rewarded<br />
donkey may not always get the goods to market on time,<br />
but will be motivated, have a far kinder and trusting<br />
relationship with its owner and will likely have a more<br />
content and meaningful life than the punished donkey.<br />
The choice we have then is what kind of owner do we want<br />
to be to ourselves?<br />
For further information on Paul Gilbert, compassion<br />
and a range of relevant books, audio and video content,<br />
please visit the following website:<br />
compassionatemind.co.uk/about-us<br />
22 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 23
That’s life<br />
with Narelle<br />
Narelle Taylor<br />
Anywhere with Colin<br />
Ros Harman, Super Navigator<br />
I haven’t always lived in a nursing home, neither have<br />
I always had to live with multiple sclerosis. I was quite<br />
normal and just before my diagnosis, I lived a robust, even<br />
adventurous life that I thought I would tell you about.<br />
It was 1982 and my husband Greg and I had built and<br />
launched the boat we planned to live on with our three<br />
children. We’d then been and visited both sets of the children’s<br />
grandparents. One set in Sydney, NSW and the other set in<br />
Kalgoorlie, WA and in doing so, we’d given the children a<br />
rushed familiarisation with mainstream Australia’s culture.<br />
We felt that because they’d spent most of their lives in<br />
eastern Arnhem Land in a remote mining community and<br />
had never seen things like a double-decker bus or an<br />
ice-skating rink we were obliged to broaden their horizons.<br />
We’d arranged distance education for them whilst on-board<br />
and had bought the latest technological devices for safety<br />
and labour-saving, whilst we’d be ‘under way’. Consequently,<br />
our suitcases were very heavy and bulging with our goodies<br />
and we flew into Darwin planning to get a connecting flight<br />
to our settlement, board our boat and then commence on<br />
the wonderful adventure we’d planned.<br />
We arrived in Darwin to find the town was full. There were<br />
‘Men At Work’ concerts and a Tax Agent’s Convention<br />
both happening in the same week. The town being so<br />
popular decidedly inconvenienced us. It was Darwin’s<br />
busiest weekend since cyclone Tracy. Lots of repairs to<br />
cyclone-damaged buildings had been done over the past<br />
few years but to be phoning around town for accommodation<br />
whilst waiting for vacancies on a plane out, was what we<br />
regarded as nightmarish.<br />
One morning, after failing once more to get on a flight, we’d<br />
secured, by phone, one night’s accommodation at a motel<br />
just around the corner. We decided to walk. The streets<br />
seemed to be crowded; Greg and I each carried a heavy,<br />
bulging, suitcase. Greg carried two actually, but neither of<br />
us said anything. We both knew things were bad enough<br />
without embroidering our circumstance by grizzling.<br />
I was tempted to groan though in the sub-tropical heat,<br />
the dense pedestrian traffic, the suitcases that were so<br />
heavy and three children to keep an eye on. That we’d<br />
be able to navigate our boat by satellite, because of what<br />
we’d just bought, but that technology had not advanced<br />
sufficiently to put wheels on our suitcases, is curious today,<br />
but was at the time, very uncomfortable. I really felt like<br />
groaning. We made it to the motel.<br />
The motel certainly appeared to be good enough. It would<br />
keep weather out. Mercifully, it was air-conditioned, and<br />
although we had said ‘yes’ to the motel management’s offer<br />
to put all the beds we needed into our one room it sure<br />
looked déclassé when we entered the room.<br />
Eventually the girls wanted to swim. We hoped the swimming<br />
pool would cool us down and brighten our moods. Poised at<br />
the water’s edge, one child screamed, wailed like a Sicilian<br />
widow and staggered backwards away from the pool. Within<br />
seconds her sister did the same and of course, so did their<br />
youngest sister. Floating in the pool was something so germy<br />
and horrible that we, the parents, weren’t going to get wet<br />
either. We returned to our cramped room.<br />
The girls had had a really memorable experience and<br />
perhaps it was that they’d never forget it that made any<br />
talking unnecessary. It was very quiet. Eventually, Greg<br />
stood, changed into a clean shirt, one with a collar (that<br />
meant something serious), kissed me on the cheek and said<br />
he’d be back in a few hours.<br />
He left. We waited. He came back. He’d bought a car.<br />
We’d drive out of Darwin, down to Katherine and then across<br />
Arnhem Land and then we’d be home. There were no roads<br />
into Gove in those days so the trip after Katherine was going<br />
to be on bush tracks; the occasional creek/river crossing,<br />
buffalo herds, brumby packs and kangaroos everywhere.<br />
We planned to sleep in the vehicle (a LWB Toyota Land<br />
Cruiser), and avoid any heroics with snakes or migratory<br />
crocodiles. We’d bought tinned fruit, a can opener, toilet paper<br />
(bio-degradable), spoons, water in huge flagons and we had a<br />
compass and a map that didn’t look all that thorough.<br />
Three days of driving and we were back home, able to see<br />
our boat, above water, and also the bloke who had said to<br />
Greg on the phone in Darwin that he’d buy the car.<br />
We got on-board and unloaded the suitcases at last. We<br />
spent a few days in Melville Bay where we fine-tuned the<br />
new contraptions we’d bought and ventured out to do ‘seatrials’<br />
before we headed away.<br />
After each day on the water, doing sea-trials etc., we’d walk up<br />
the beach to the boat club and I would be unsteady on my feet<br />
because of what I thought was some ‘sea-leg’ thing. It was years<br />
before I had my unsteadiness investigated and MS diagnosed.<br />
Prior to my diagnosis, I was having great fun doing such<br />
interesting things and even now, I find my diagnosis no<br />
reason for doing things of less interest and no reason to<br />
have less fun.<br />
I held out for as long as I could. All around me I saw people<br />
succumbing to the pressures of advertising and peer<br />
pressure, but I was determined to stay strong. I would not<br />
buy a Navigator for my car! No, not even if sometimes I did<br />
end up lost and bewildered up blind alleys, meandering<br />
through unknown suburbs, having to stop, often on the side<br />
of roads, to pour over my ancient street directory.<br />
Then one day an old school friend, coincidentally the same<br />
age as me, fervently pointed out that difficulties with<br />
directions were nothing to do with age or hormones.<br />
“I blame urban growth,” she said, so I decided I would too,<br />
and I bought a GPS Navigator.<br />
My Navigator has transformed my life. I love the fact that I<br />
am able to choose a voice for it, so I picked one that sounds<br />
like Colin Firth. When I’m driving and the voice says – “In<br />
500 metres at the roundabout take the second exit”. I smile<br />
dreamily as I remember that scene from Pride and Prejudice<br />
where Colin Firth comes striding out of the lake all damp and<br />
masculine in his wet shirt. I’m so much more relaxed driving<br />
now with Colin in the car. Sometimes I even take a long drive<br />
just to spend some quality time with him.<br />
I took a long drive with Colin the other day and went to visit<br />
my niece. She is the first of her generation in my family<br />
to have children of her own, and I have discovered that I<br />
love being Great Aunty Ros, or Grunty Ros as they call me.<br />
My Great Niece (Griece?) at two and a half has recently<br />
discovered a new word and manages to use it in every<br />
sentence. “Akshully (actually) me don’t want soup,” she said<br />
very firmly today, stomping her feet to make sure we knew<br />
she meant it. “Me want cake for lunch akshully.”<br />
Her brother, at four and a half, is a passionate devotee of<br />
superheros and invited me to look at his Spiderman T-shirt<br />
and shorts in great detail. He hates to take them off, much<br />
to his mother’s despair. She has managed to buy all the<br />
Spiderman material available in Spotlight so she can make<br />
multiple outfits. The little hero also taught me how to hold<br />
my fingers so they shoot webs out and catch the baddies.<br />
I’m sure I will find that very useful.<br />
Both children are fascinated by my wheelchair and spent<br />
considerable time examining the brakes. Spiderman very<br />
helpfully pushed me around the house and showed me his<br />
toys. We had a little itsy bitsy problem when I decided to go<br />
down a step to see the new trampoline, resulting with me<br />
lying on my back with my legs in the air. It didn’t hurt very<br />
much and he tried very hard to help me up, but in the end he<br />
used his supersonic voice to call his mum who came faster<br />
than a speeding bullet to save the day.<br />
I think super powers run in the family. I wonder what mine<br />
could be. I’ve thought about leaping tall buildings in a single<br />
bound but I don’t really have a head for heights. X-ray<br />
vision would be useful these days; I could save a packet of<br />
money on medical bills. I quite like Wonder Woman’s outfit,<br />
especially her red boots. Every woman craves red boots.<br />
I’m a bit of a romantic, but living with MS has taught<br />
me I also need realism. I think perhaps I might become<br />
The Intrepid Ros, Super Navigator - able to go anywhere<br />
“akshully”, with Colin.<br />
24 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 25
Skydive for MS<br />
Running the<br />
Barossa Marathon<br />
Robin Wedding<br />
On Sunday, 29 May, I completed my first marathon at<br />
the Barossa running festival.<br />
The start and end point was Faith Lutheran College, just<br />
outside Tanunda. The two 21.1km loops included Research<br />
Road and was set amidst an endless expanse of vineyards.<br />
It was an experience to remember! Particularly noteworthy<br />
was the sense of camaraderie felt between all runners that<br />
day. There were high fives between running buddies, shared<br />
encouragement between strangers, even a runner offering<br />
around his bag of lollies midstride.<br />
After all, from elite to enthusiast, we had all completed<br />
the same rite of passage, the training preparing us for<br />
this day. With only a few hundred metres to go, I met up<br />
with my mentor who ran with me before passing the baton<br />
to my wife who accompanied this shuffling snail for the<br />
final stretch.<br />
Many thanks go to South Australian Road Runners Club<br />
(SARRC) for the training and support, and friends and<br />
family for their encouragement. The weekly long runs<br />
really do get you over the finish line!<br />
Do you know what services are<br />
offered by your local council?<br />
MSSANT Occupational Therapist Anna and her cousin<br />
Josie love doing things together.<br />
In August, they gave up their usual walks along Henley<br />
Beach, camping trips and Friday movie nights in favour<br />
of throwing themselves out of a perfectly good airplane<br />
(parachutes attached and working) to raise money<br />
for MSSANT!<br />
They said, “Finding a cure and supporting people with<br />
multiple sclerosis is a cause that sits very close to our<br />
hearts as we have both met courageous beautiful loving<br />
individuals who are living with this condition.<br />
“The more people that know about MS and support us, the<br />
greater our impact and the closer we are globally to a cure.”<br />
Having set a goal of $1,500, they smashed it by raising<br />
a total of $2,508. All monies raised from the fundraiser<br />
were donated to the MS Society of SA & NT to fund<br />
services and support MS research.<br />
Congratulations to Anna and Josie for their<br />
amazing contribution.<br />
We all know that councils look after properties, infrastructure,<br />
dogs and cats and charge council rates, but are you aware<br />
of the programs and community services that are available<br />
close to your home? Many councils offer community bus and<br />
transport services, home assistance and social activities.<br />
There may be social groups going out for lunches and bus<br />
trips, friendship groups, men’s sheds, gentle exercise classes,<br />
walking groups, arts and crafts classes, and gardening, fishing<br />
and movie groups. Some activities are free and others are often<br />
at a very low cost, often with door to door transport provided.<br />
Visit your council office or visit their website for<br />
more information.<br />
26 <strong>Spring</strong> <strong>2016</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> <strong>2016</strong> 27
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Are you NDIS Ready?<br />
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The Coloplast logo is a registered trademark of Coloplast A/S. © <strong>2016</strong>-08 CON478. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.<br />
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