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network<br />

The Official <strong>Magazine</strong> of the MS Society of SA & NT | ms.asn.au<br />

Read about Anna and Josie’s amazing skydive.<br />

<strong>Spring</strong> 20<strong>16</strong><br />

Skydive for MS<br />

Dietary information<br />

Peer Support<br />

Self-Compassion: Our greatest ally


Inside | <strong>Spring</strong> 20<strong>16</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) 8<strong>16</strong>4 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) 8<strong>16</strong>4 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 <strong>16</strong><br />

Share your MS experience in an eBook <strong>16</strong><br />

Dietary information 17<br />

Peer Support 18-19<br />

Information Sessions 20<strong>16</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> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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. 20<strong>16</strong><br />

Mar;28(3):761-8. Epub 20<strong>16</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. 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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 20<strong>16</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 />

<strong>16</strong> <strong>Spring</strong> 20<strong>16</strong> The MS Society of South Australia & Northern Territory Want more informaon? The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</strong> 19


Information<br />

Sessions 20<strong>16</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 20<strong>16</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 3<strong>16</strong>8<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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</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> 20<strong>16</strong> The MS Society of South Australia & Northern Territory The MS Society of South Australia & Northern Territory <strong>Spring</strong> 20<strong>16</strong> 27


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The Coloplast logo is a registered trademark of Coloplast A/S. © 20<strong>16</strong>-08 CON478. All rights reserved Coloplast A/S, 3050 Humlebaek, Denmark.<br />

CON478.indd 1<br />

25/08/20<strong>16</strong> 2:37:49 PM

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