Network - Summer 2013/14

12 | 2013 MS Network Magazine

Network News MS Mud Run Our people Keeping cool this summer Cooling your home efficiently Peer Support and Education Peer support update Accessing South Australian Government funded equipment and services

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22 Thank you!

24 Multiple Solutions 26 MS Bookshop reviews 27 Client stories 29 Community fundraising 36 MS Mighty Swim 39

e ta i l s ! d y d d e mu See th o page 10 Turn t

The magazine of the Multiple Sclerosis Society of SA & NT |

www.ms.asn.au

In this issue

In this issue From the Editor................................................................ 3 Letter to the Editor..................................................... 4

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CEO report.............................................................................5 News................................................................................................6 MS Mud Run...................................................................... 10

16 Our people......................................................................... put Such a good show Keeping cool thisA summer nd ........................... 17 on today, guys. ............... 18 Cooling your homeea efficiently t all for such a gr Peer Support and Education work. .................. 19 cause. Awesome Peer support update......................................... 20 Jess Accessing South Australian Government funded equipment and services.............................. 22 Thank you!.......................................................................... 24 Multiple Solutions................................................... 26 MS Bookshop reviews..................................... 27 Client stories.................................................................. 29 Community fundraising..................................36

MS Mighty Swim........................................................39 Locations.............................................................................. 40 MS Head Office PO Box 377 Salisbury South DC SA 5106 P (08) 7002 6500 Toll Free 1800 812 311 F (08) 7002 6599 E ms@ms.asn.au MS Northern Territory PO Box 867, Nightcliff NT 0814 P (08) 8948 5300 F (08) 8948 5344 E nt@ms.asn.au www.ms.asn.au MS Society Privacy Policy: The MS Society of SA & NT is committed to the protection of private information. A full copy of the MS Society Privacy Policy is available by phone: (08) 7002 6500 or online at www.ms.asn.au Disclaimer: Material published in Network may not be reproduced in any form without permission from the MS Society. Any views expressed are not necessarily the views of the MS Society. All reasonable efforts have been taken to ensure the accuracy of any content but no responsibility can be taken for any error or error by-omission.

Guest contributor: Spiro Koulocheris.

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MS Network Magazine 12 | 2013

From the Editor

From the Editor It is great to see some new oral drugs now available on the PBS for people with relapsing remitting MS. When I first started here, there were only injectable medications available.

It is great to see more options now available to people with MS. I hope 2014 will bring even more treatments and for all types of MS.

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22 Hi everyone,

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I cannot believe we are at the end of 2013 already and it is mud run time again! Now in its second year, we have certainly made it bigger and better.

A big thank you to everyone who was involved, whether you volunteered, donated, ran or came down to watch – you all helped make it a muddy terrific day!

A special thanks to those who shared their stories with me and the media for the mud run. Alana, Sarah and Lewis (on the front cover), Kelly, Simon, Trish and Julie – thanks for helping us create awareness.

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As you will see on page 19 our Peer Support and Education program has been invigorated with Mary-Anne Edge taking up the role recently.

Mary-Anne has some great ideas for seminars in 2014 and the peer support program seems to be growing quickly – which is terrific! If you are interested in attending a peer support group, give Mary-Anne a call and she can help connect you with others in your area.

I hope everyone has a relaxing and Merry Christmas. Enjoy the holiday period and keep cool!

Until 2014…

Renee Meredith Editor Network MS Society of SA & NT Inc feedback@ms.asn.au

In this edition we have some tips and articles on keeping yourself, and your home, cool over the summer months.

I know many people with MS struggle in the heat, with just a .5 degree change in body temperature causing symptoms to exacerbate. If cooling down is an issue, there are a lot of products on the market that can help.

Personal Cooling Products and Arctic Heat offer a discount to people with MS who need these products, see page 17 for more information.

12 | 2013 MS Network Magazine

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Letter to the Editor

Letter to the Editor Dear Renee,

A little bit of news from our auxiliary for the magazine!

The Lucindale community has been a strong supporter of the Naracoorte Auxiliary for more years than I can remember! Thirty years or more, when we used to conduct Melbourne Cup luncheons, one Lucindale lady would arrange for 2 or 3 car loads of people to come and support us, and this support has continued in many ways over the years.

The last few years, a group of ladies have conducted a ‘footy tipping’ competition in the district and we have been lucky enough to get wonderful support from this activity – each year the amount of money we are given increases, last year is was $1000 and this year the cheque was just over $1100, such a wonderful boost to our funds.

We have been able to support our clients with some very essential equipment and we also pay for the client fees and the Physiotherapy Department and The Lucindale Fitness Centre.

Last week we conducted a very successful Badge Day, raising just over $800 and recently we sent $2000 to Sydney for the research program.

Yours sincerely, Barbara Johnson Secretary – Naracoorte Auxiliary

Editors Note: Thank you for your letter Barbara. What an amazing effort by the Naracoorte Auxiliary and the Lucindale community. It’s terrific to hear about the difference you are making to the lives of people with MS in your community. Renee.

Send your letters to: Editor Network PO Box 377 Salisbury South DC SA 5106 or email feedback@ms.asn.au 4

MS Network Magazine 12 | 2013

CEO report

CEO report for people newly affected by MS, which seems very comprehensive and informative. A key feature of this approach is the self-paced system of information provision, in an attempt to prevent information overload in the early stages of MS. It also appears to tick many of the boxes identified in the December 2012 MS Needs Analysis. We will be looking at this model, amongst others, in the early stages of 2014.

I have had the opportunity in recent weeks to attend two conferences highlighting the latest findings in research into MS, and world best practice in improving the level of information and education available to people who have been recently diagnosed with Multiple Sclerosis.

I am impressed with the volume of research being undertaken worldwide, and the calibre of the researchers involved. Very passionate people are devoting their time and effort, not to mention money, into developing a better understanding of the causes of MS, so that eventually a cure or prevention can be found.

Much excitement seems to exist around the possibilities in stem cell treatments, as well as in genetics.

I hope you are keeping up to date with research news on the MSRA website at www.msra.org.au or the MSIF website at www.msif.org We are looking closely at a Swedish model of information and education

The Board of the MS Society, the PwMS Committee and society staff have begun the development of a new Strategic Plan for the period 2014/2015 to 2016/2017. There have been many changes both internally and externally to the organisation since the preparation of the last Plan, and the time is right to review our direction in the light of the current environment.

Two significant items that will be taken into account in the new Strategic Plan are the emergence of the National Disability Insurance Scheme (now National Disability Insurance Agency, or NDIA), and the results from the MS Needs Analysis, which will inform us of the needs identified by people with MS in South Australia and the Northern Territory. The new Strategic Plan will be completed by March 2014, in time to inform the preparation of next financial year’s financial budgets.

We have been keeping an eye on the launch sites of the NDIA, especially interstate where the sites are targeting people in a more appropriate demographic than the under-three year old cohort in the South Australian trial sites. Two things stand out from the early experience: There are many more (over 50%) people eligible for services in the launch sites than were

expected; and those people who have been accepted into the scheme and have started receiving services are generally very happy with the scheme.

This is good news!

The closure of our site at Greenacres has seen the Physiotherapy team move to 273 Main North Road, Enfield, along with our Multiple Solutions Employment staff. This has led to a reduction in space and capacity for the physio team, but we are currently negotiating with several other organisations to provide services to PwMS at several other sites around Adelaide, as well as regional areas and in Darwin and possibly Alice Springs. We hope the easier access will lead to more people receiving the benefits of MS Society services.

The Bernie Lewis MS Mud Run held at Urrbrae Agricultural High School on Sunday 1 December saw over 3,000 people slog their way through the 4km or 5.6km course, with total attendance across the day at about 18,000. We were overjoyed not just at the high level of participation and fundraising, but also at the opportunity to raise the profile and knowledge of MS amongst so many members of the community. My thanks and congratulations go to our Fundraising team, and an army of over 200 volunteers, who made the event such a success. Enormous thanks too, to all those participants who ran the course, and to the thousands of people who sponsored them.

Our next event is the MS Mighty Swim at the Unley Swimming Centre on 8 & 9 February 2014. Early bookings for this event are strong, so please register early to avoid disappointment.

We expect the event to be bigger and better than ever.

12 | 2013 MS Network Magazine

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CEO report | News

CEO report continued And in an exciting new fundraising development, the Board of the MS Society last week approved the holding of the inaugural MS World Velo Enduro 24. Details of this road cycling challenge are still secret, with a public launch of the event to be held in January 2014. Watch this space!!

Christmas is upon us, and of course the hot weather will soon be evident.

Please take all the necessary precautions to stay cool during these hot spells. If you have no cooling system in your home, please contact the ‘MS Assist’ Line on 1800 812 311, so that we can get an idea of just how many people are at risk. Knowledge of such cases gives us the power to negotiate on your behalf.

In closing, I want to thank the many PwMS who have become involved with the Society, and who share with me their stories so that I can better understand the needs of PwMS. I also offer a big thanks to all of our hardworking staff, members of various committees, including the PwMS committee who dedicate so much time to improving our Society; to our very dedicated Board members who likewise donate a lot of time and expertise for the benefit of all, and to the hundreds of volunteers who assist the Society in so many different ways over the course of the year.

I wish you all a restful and peaceful Christmas season, irrespective of your

religion or beliefs. In all walks of life it is a time to spend with family and friends, and to celebrate in our own way those people and things that are important to us.

Graeme Warnock Chief Executive Officer MS Society of SA & NT Inc

News Fampyra Petition A Facebook group has been set up to gather signatures on a petition to get the drug ‘Fampyra’ listed on the Pharmaceutical Benefits Scheme (PBS).

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MS Network Magazine 12 | 2013

Fampyra is a treatment that may improve walking in adult patients with MS who have walking disability.

To access the group search for ‘Fampyra petition’ on Facebook and for more information on Fampyra visit www.msra.org.au

News

Home Solutions for Multiple Sclerosis Ambulance Cover

Christmas Closure

Are you, and your family, covered for an emergency ambulance? We strongly recommend that everyone should consider having ambulance cover.

The MS Society head office will be closed for Christmas from 5pm Friday 20 December and will reopen Thursday 2 January at 9am.

Often it is covered by private health extras (check your policy) or for a small amount per month, SA Ambulance cover will ensure you do not have these enormous bills.

The cost of an emergency ambulance is generally around $600–$900. If you are covered with SA Ambulance Service, you won’t have to pay a cent if: n

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the service is provided by SAAS; or the ambulance transport originates in another State or Territory and is provided by a recognised Interstate ambulance service.

Fees below for emergency transport cover: (extra fees apply for non emergency cover) Single

Family

Pensioner Single Pensioner Family

$71.00 $141.00 $45.00 $89.50

Email AmbulanceCover@health. sa.gov.au or call Customer Service Centre on 1300 13 62 72 More information at www.saambulance.com.au

The ‘MS Assist’ Line 1800 812 311 will close from 2pm on Tuesday 24 December and resume 9am Thursday 2 January.

If you need any assistance over this period please contact your GP or other healthcare professional.

In an emergency situation, call or go directly to the emergency department at the hospital.

Useful numbers over the holiday period Disability Services After-hours service: 08 8372 1414

We are excited to be announcing the ‘HS for MS’ project for the year 2014.

The project will be working together with the MS Society and the community to increase home safety and risk management services.

We would love to hear your thoughts on this.

1. What do you think home safety involves?

2. What information/services have you received for home safety? Have you found them useful?

3. Have you got any unresolved issues at home that you would like services for?

Respond online in the link below: www.surveymonkey.com/s/FNZTG56

Vicky Lam and Charlene Duffy Occupational Therapy Students from the University of South Australia

Lifeline If you feel that you might need phone counselling, you can call 131 114 about anything that might be troubling you.

Crisis Care assists people in crisis. Opening hours: 4:00pm to 9:00am weekdays, 24-hours on weekends and public hoidays.

Call 131 611

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News

News continued NDIS update You will notice various agencies now referring to the National Disability Insurance Scheme (or NDIS or Scheme), rather than DisabilityCare Australia.

This reflects the new Australian Government’s decision to revert to the original name for the NDIS. The public service organisation that manages and administers the Scheme will be known as the National Disability Insurance Agency or NDIA. Sometimes people will refer to the NDIA as the Agency.

If you would like to receive NDIS news and updates by email, you can subscribe at: www.ndis.gov.au/news

2014 Whyalla Disability & Lifestyles Expo A one-stop-shop for disability and lifestyle solutions regarding advocacy, aged care services, education, employment, disability support services, health and well-being.

Friday 21 March 2014 from 10am to 4pm at Westlands Hotel/Motel, 100 McDouall Stuart Avenue, Whyalla Norrie. Exhibitor registrations are now open for this event. For more information call 8236 0575 or email events@dircsa.org.au

Congratulations – Gen Houston!

Big congratulations to Gen Houston who recently passed her piano exam.

Gen won an MS Choice Award a few years ago to help her return to her piano playing. She has been working hard for this exam and we send her our heartfelt congratulations for her hard work! Well done Gen! 8

MS Network Magazine 12 | 2013

New Treatments added to Pharmaceutical Benefits Scheme New Federal Health Minister, Peter Dutton, has approved the listing of two new treatments for relapsing remitting MS on the Pharmaceutical Benefits Scheme (PBS) – Aubagio and Tecfidera.

Both treatments are oral medications that have proven in clinical trials to limit the impact of MS symptoms and to slow the onset of the disease.

They will be available through prescription from your neurologist from 1 December 2013.There are now 8 different medications to treat relapsing remitting MS available.

You can find more information about these treatments from www.msaustralia.org.au/pbac/ index.asp or contact one of the MS Society nurses.

If you have changed medications the MS Society nursing team would really appreciate hearing from you so they can keep up with how the new treatments are working for people.

The best way is to give our ‘MS Assist’ Team a call on 1800 812 311, and a nurse will call you back.

Renee Thonard Award The Renee Thonard Award is the Society’s most prestigious award, given annually at the AGM to an individual or group, in recognition of consistent and meritorious service to the Society. Renee Thonard was a founding member of the Society in 1964.

At the 2013 Annual General Meeting held on 30 October, Dennis Hughes was announced as the 2013 winner of the Renee Thonard Award. Most staff will recognise Dennis as his friendly face has been around the office since 1982! Dennis has provided a range of face-to-face client support over the years – the bus driver to take clients on outings, the gopher for client picnics, dinners and fundraising functions; the person who delivers equipment to a client’s home, to repair it when it’s broken or to pump up the tyre of the wheelchair. He is now part of our community development team, going into the homes of clients to provide maintenance, cleaning, gardening, and handyman chores and to provide a listening ear to those who want a chat.

Congratulations Dennis!

Page heading 1 | Page heading 2 | Page heading 3 News | etc

MS Assist Telephone Information Service Women’s Health – Highgate Park Clinic Highgate Park Clinic conducts a Women’s Health day each month for women who have a disability to enable a pap smear and breast examination.

Many GP’s cannot do the test as they don’t have the required equipment such as lifters and most importantly the time which is required.

The Highgate Clinic allows an hour for each client to enable the test and examination to be carried out in a relaxed manner to hopefully alleviate any feelings of anxiety.

For each appointment they have two female registered nurses and one female doctor in attendance.

Furthermore, to make this test and examination as pleasant as possible, the second part of the appointment is a pampering session.

Volunteers working with the clinic offer facials, hand massages and fingernail painting in a spa like environment with aromatherapy oils and relaxing music to create a beautiful ambience.

Refreshments are also offered which includes of tea, coffee, cake, juices, fruit and cheese platters.

For more information contact: Highgate Park Clinic Level 1B Highgate Park 103 Fisher Street Fullarton SA 5063 Tel: 8372 1442 Fax: 8372 1491 Parking: enter from Fisher Street.

General and disability parking is available. The Highgate Park Clinic bulk bills.

MS Assist can help you with information such as: n Transport options in your area n Centrelink processes & forms n Local Council & State Government services in your area n MS Society services n Continence support services n Research updates n List of Neurologists in SA n And much, much more…

Our free call MS Assist number is 1800 812 311 Please Note: Calls to 1800 numbers from a landline are free however some Mobile Phone Services may charge for these calls so check with your provider first.

The telephone information service operates during business hours Monday to Friday, excluding Public Holidays. Callers are able to leave a message outside these time and our operators will return their call on the next business day.

Email queries may also be directed to msassist@ms.asn.au

12 | 2013 MS Network Magazine

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event. Great Fantastic family osphere was fun and whole atm music, friendly excellent. Good of well priced helpful crew, lots nised....the catering, well orga goes on and on. list of positives Anna

put Such a good show And on today, guys. eat all for such a gr work. cause. Awesome Jess

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days One of the best w it of my life.....I kne fun, I was going to be ould had NO idea it w n....... be THAT much fu Thanks to ALL Kara

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Were you a part of the 2nd Bernie Lewis MS Mud Run, held at Urrbrae Agricultural High School on Sunday 1st December? The MS Society of SA & NT once again got down and dirty to raise funds for people living with MS and their families, and showed Adelaide that Getting Dirty Never Felt So Good!

Following on from the inaugural 2012 event, this year we promised our Mud Runners bigger, better and muddier!

With almost double the obstacles and plenty of mud to go around, Mud Runners of all ages navigated the militarystyle obstacle course in record numbers, proving that Adelaide really does love getting dirty. This year our new categories proved very popular, with fitness fanatics battling it out to become our Elite race champions, and parents and kids enjoying the opportunity to run together in the Family Mud Pack races. Congratulations to Harrison Hughes and Anthea Bennetts, our male and female Elite winners who took home an amazing prize pack for being the fastest around the track.

Of course most people were there just to have fun, and we saw our fair share of surprising, strange and spectacular costumes throughout the day. A big shout out to Kylie, who won a double pass to next year’s race for her amazing costume, Kylie wore a pure white wedding dress complete with veil, it wasn’t white by the end though!

Our Chief Mudders also drew lots of attention on the day! This group of CEOs, managers, politicians and generally important folk are big supporters of the MS Society, and were willing to get muddy to prove it! While some were spotted limbering up and enjoying the hospitality of the VIP tent prior to the race, there were a few serious competitors who blew everyone else away. With the determination (and dirty tactics) that was shown during the race it’s no wonder these guys are top of their fields! Congratulations to our winning joint Chief Mudders for 2013, Jordan Wissell from Wissell earthmoving and Tom Williamson from the Palmer group, what a great effort to make it to the top of the pack. Of course the other winning Chief Mudder was Mark Lewis from Bernie Lewis, who was our highest fundraiser. What a champ! To all our other Chief Mudders, thank you for your participation, fundraising and support, and remember it’s never too early to start training for next year!

Massive thanks also to our amazing muddy Crew volunteers – we cannot put into words how vital your assistance is to the overall success of the event. We hope you had a great time with us at the Bernie Lewis MS Mud Run, we have had so many comments about how friendly and helpful our Crew were and we cannot thank you enough!

Speaking of thanks, events like this don’t come together without the support of our amazing sponsors. We are lucky to have had an awesome group of organisations who were willing to support this event, and went above and beyond to help us and ensure it was a success. Bernie Lewis was again our Naming Rights sponsor, and a big thank you goes to Mark, Stefan, Amelia, Vivian and the team for loving the MS Mud Run as much as we do! Ochre Digital were Major Sponsors, and produced all the amazing signage you saw prior to and at the event. Nothing was too much trouble for the guys at Ochre. Coates Hire provided us with pretty much everything but the kitchen sink so that the event could go off without a hitch, and it was great to see Matt and the Coates Mud Crabs enjoying the muddy fun out on the course! Big shout out to all our Obstacle Sponsors, Event Partners and Event Supporters, we couldn’t have done it without you.

The beautiful Urrbrae Agricultural High School is an amazing backdrop for the MS Mud Run, and Crew would like to thank the wonderful Maxine and her team for making their grounds, equipment and staff available to us and embracing the muddy spirit of our event! Deb and Yvette from dbusiness events made everything happen for us, and Lucas and the team from Highgate Engineering did a fantastic job of building a safe, fun and muddy obstacle course for us once again this year. Big thanks to the MS Society staff and board members who worked tirelessly to bring this event together, great job!

Of course the biggest thanks must go to our muddy MS Mud Runners for helping to raise a huge amount of money for the MS Society and being willing to get down and dirty for a great cause. Feedback from our Mud Runners on the day was fantastic; the event has been embraced by the community and we can only expect it to continue to grow and become even better in the future. We will let you know the date for the MS Mud Run 2014 very soon, but until then, remember...

Getting Dirty Never Felt So Good!

The

Crew

MUD

RUN

The MS Society of SA & NT is incredibly grateful for the support from the corporate community. Together we are all helping make a difference in the lives of people living with multiple sclerosis.

Proudly Sponsored By Naming rights sponsor

Major sponsors Business Name: Contact Person: Address: Location: State: Post Code: Phone Number Moblie: Fax Number: Email Address:

EVENT PARTNERS

Wissell Earthmoving Jordan Wissell 2 Basten Avenue Seaview Downs SA 5158 0411 677 334 jordanwissell@bigpond.com

Ad Number: 55490 Site Number: EHC7058/EHC7042 Site: Harcourts Morphettvale/Christies Beach/ Harcourts Aberfoyle Park

Ad Size: 45x65mm Date: 14/02/13 Designer: Adam approval Deadline: 06/03/13

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IsseLL eartHmovInG See the Earth Move

TIPPER, BOBCAT & EXCAVATOR HIRE WE CAN DIG IT, FILL IT, LEVEL IT OR REMOVE IT! WE CAN GRASS IT, PAVE IT, FENCE IT OR RETAIN IT! NO JOB TOO BIG OR SMALL, WE CAN DO IT ALL!

EVENT Supporters

Phone Jordan Wissell 0411 677 334

jordanwissell@bigpond.com

pLeASe pRoof ARTWoRK cARefULLY

Whilst every care has bee above artwork carefully for any errors, as Moving Together cannot accept responsibility for To approve simply tick the approveD / proCeeD circle, then sign and fax back on 07 To make amenDments email back with the changes you would like clearly outlined.

If we have not received a reply by the deadline (stated above) or within 7 working da

Please note the following artwork guidelines: Minimum font size 7pt. Ads must be marked by stroke, colour or gra Images and non-vector logos must be high-resolution suited to the offset printing process (300dpi or greater – If below We do not accept Excel, Publisher or Powerpoint documents. All proofs are sent at low resolution, therefore pics an Colour Disclaimer: Please be aware that colour may vary between on-screen, laser printouts and final printing. If a values. We print in CMYK colour mode and are not responsible for any colour shift that occurs in conversions from not guarantee colour matching or ink density on JPEG or PDF screen proofs. Screen proofs will predict image prop

Please tiCk aPProPriate CirCle:

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Our people

Our people Holly Jasper Staff Job Title: Occupational Therapist But what do you do?

I work with clients following a referral from Disability Services to assist them to overcome a barrier which they are facing on a day to day basis.

I do this mainly through prescription of equipment, installation of home modifications or learning a new skill.

How long have you worked at the MS Society?

I have been employed here just over 12 months.

I always find it useful to collaborate with another discipline as they can offer an alternative outlook or insight and they are always supportive of each other and of our clients.

Describe yourself in 3 words.

Kind, happy, thoughtful What’s your favourite food?

Home-made lasagne

What is the most enjoyable part of your job?

Probably meeting wonderful clients and their families and being able to

When you’re not working at the Society, what do you do?

I like to play netball, go to the gym, do yoga, bake, go for walks or spend time with my friends and family.

Dennis Hughes Staff

Describe yourself in 3 words.

Caring, compassionate, empathetic.

Job Title: Maintenance and Support Services Officer

What’s your favourite food?

Roast lamb.

But what do you do?

Home maintenance and gardening services for MS Society clients, maintenance of MS offices, delivery of equipment to clients and help with fundraising events.

When you’re not working at the Society, what do you do?

I spend my time with family and friends, renovating the house, watching sport and going to Crows games and fishing.

How long have you worked at the MS Society?

I have worked for the MS Society for 31 years.

What is the most enjoyable part of your job?

Meeting clients and hopefully making things a little easier for them.

16 MS Network Magazine 12 | 2013

go into people’s homes and to work with them on an issue which they are facing every day. I also love working with the wonderful and kind team here at the MS Society.

Page heading 1 | Page heading 2 Keeping | Pagecool heading this summer 3 | etc

Keeping cool this summer Many people with MS find the summer months particularly difficult as their symptoms are worsened by heat.

Cooling yourself down before, during or after activity can help to reduce the effects of heat and the problems that it can cause. Cooling techniques can range from cheap and simple ideas to more expensive equipment items. The following are a few suggestions on how to keep cool.

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Have regular cold drinks or suck an ice cube or frozen pineapple chunks. If you are used to having a coffee in the morning, swap it for an iced coffee.

Avoid hot foods. Choose salads and sip iced water while eating.

Spray your face and wrists with a spray mister which can be cheaply refilled from the tap at home.

Cool down before activities with a cold shower. Getting chilly before heading outside helps to buy some time before you feel the heat.

Exercise in water. Hydrotherapy is a great way to keep cool while exercising.

Avoid exercise in the middle of the day. Try the mornings and evenings instead.

A floor or desk fan can help to keep the temperature down and the air flowing in a room. A hand held fan can be useful when moving around.

Wear loose, breathable clothing.

Plan ahead. Check the weather forecast on www.bom.gov.au and plan for rest periods on hotter days.

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Park your car undercover if possible or use a sun shield to block the sun out.

Cooling garments Cooling garments can help to cool the body and can provide people with relief from MS symptoms.

They can also help people with MS be more active through exercise and outdoor activities.

There are a variety of cooling garments now available including vests, neck ties and hats. These contain a gel or other substance that can be pre-cooled before wearing. Depending on the product, the cooling effect can last from a few hours or the whole day.

Personal Cooling Products have a range of products available (see ad on page 18) including the ‘Aussie Cool hat’ which has been designed to complement their neckties. The hats offer total air flo, 50+ sun protection, wide shady anti-glare brims, terry towelling sweatbands, snap-safe neck cords, are lightweight, adjustable, crushable, unisex and come with a free magic Cooling Pad to wear in the pocket hidden in the crown of every Cool Hat. Varied styles available.

Personal Cooling Products are offering Network readers 10% discount on all the products. Shop online at www. personalcoolingproducts.com.au and enter the code 4467. Stay cool!

Arctic Heat offer a discount on their cooling vests to people who have MS. These vests are normally $198 + postage, reduced to $132 + postage.

Visit www.arcticheat.com.au or call 07 5522 15527.

If staying cool at work is an issue, Multiple Solutions may be able to assist with some of these products through the Workplace Support program.

See page 26 for more details.

Useful links www.personalcoolingproducts.com. au/contact.html (offer 10% off to readers with code 4467) www.arcticheat.com.au (offer discounted cooling vests) www.quantumchill.com.au| www.kooltubes.com.au www.icepack.com.au www.necktiecoolers.com

References www.mstrust.org.uk/information/ opendoor/articles/0708_11.jsp Intouch – Summer 2012 The magazine of MS Australia – ACT/NSW/VIC 12 | 2013 MS Network Magazine 17

Cooling your home efficiently

Cooling your home efficiently As the weather starts heating up, it’s the perfect time to think about how you will keep cool at home this summer.

To help keep your home cool, shade windows in the day, especially on the north, east and west sides of your home. External shading is best, but even closing curtains and blinds inside your home to block out direct sunlight will help to keep rooms cool.

Deciduous trees and eaves can also provide shade.

If you have insulation installed in the ceiling and walls, this can help to reduce amount of heat entering your home.

The cooler you keep your home naturally, the less your cooling appliances will need to work, keeping your energy costs down.

Ceiling and pedestal fans are the cheapest type of cooling appliance to run, costing just 1 to 3 cents per hour.

They can also be used to complement other cooling appliances by moving cool air around your home.

Evaporative coolers have low running costs, are well-suited to the dry South Australian climate, but also use water, so check the water use and costs too. To work effectively evaporative coolers need good cross ventilation, which can be achieved by opening windows.

Refrigerative air conditioners have higher running costs, so try setting the thermostat between 24°C and 27°C, or as high as you feel comfortable with. Every 1°C lower can add 10% to the running costs of your appliance.

You can also lower running costs by only cooling the rooms you are using by closing doors or using zones.

If you’re purchasing a new cooling appliance, choose a system that is right for your needs and is properly sized. For ducted systems look for one that has energy efficient ducting.

Look for an energy rating label, or ask your retailer about the ongoing running costs.

For more tips on energy efficient cooling and how to calculate an appliance’s running costs, visit

sa.gov.au/energy or call the Energy Advisory Service on 8204 1888.

During extreme heat it is easy to become dehydrated or your body to overheat. This is especially important for infants and older people. SA Health offers advice about staying healthy in extreme heat online at sahealth. sa.gov.au, or copies of their extreme heat guide can be obtained from local libraries, medical services, community centres or by calling 8226 7115.

If you are affected by heat-related illness and need medical advice contact healthdirect on 1800 022 222 or your local GP or hospital emergency department.

The article is courtesy of the South Australian Government’s Energy Advisory Service.

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Peer Support and Education

Peer Support and Education Mary-Anne Edge has commenced as the new Peer Support and Education Coordinator for the MS Society.

Some of you may know Mary-Anne already as she has worked for the Society for a long time, mostly in employment services supporting people who have MS and other chronic conditions to remain at work.

Mary-Anne is now part of the MS Assist team and her new role involves supporting and developing Peer Mentors and Support Groups as well as organising the education and seminar program. The purpose of MaryAnne’s role is to improve community awareness and understanding of MS and better respond to the information and education needs of those living with MS in SA & NT. The old saying “Knowledge is Power” is so true and we believe strongly that the more information and options people have, the better they will be able to manage their MS journey.

Mary-Anne is based at our Modbury office and works Monday-Thursday.

She can be contacted by phone on (08) 8203 6600 or via email at medge@ms.asn.au

Education seminars 2014 The MS Society of SA & NT aims to provide a series of seminars and workshops that responds to client requests for information and education.

Some will focus on maintaining a healthy lifestyle and keeping you up to date with the latest information and research on MS, while others will provide opportunities to learn about future/financial planning, travel and other activities. A variety of venues will

be provided in the hope that some will be located close to your home, and for those living a long way from Adelaide, we will arrange for the sessions to be recorded and available to you. Family and friends are also welcome to attend these education seminars.

The MS nurses will be able to provide information and answer your questions on the latest treatments and research.

At the time of printing details of events have not been finalised but the following is proposed:

There will be a panel discussion with experts from the fields of Legal Rights, Centrelink, Financial Planning and Superannuation, to answer your questions and help with your planning for the future.

Newly Diagnosed Seminars February and August 2014 city location Have you or someone close to you been diagnosed with MS in the last 12 months? Come along, learn more about MS and take up the opportunity to ask your own questions. This information session will cover an overview of MS by a neurologist, with information on the latest treatments and research. A physiotherapist will talk about the importance of fitness and exercise with MS. A Multiple Solutions employment consultant will discuss your rights with regard to employment, privacy, disclosure and available workplace support.

Information on peer support groups and other MS Society services will also be provided.

Newly Diagnosed – Maintaining a Healthy Lifestyle May and November 2014 north and a south venue Again aimed at those diagnosed with MS in the last 12 months but others are very welcome. Guest speakers will talk about how you can develop and maintain your health – topics will be diet, sunlight, exercise, meditation, preventing depression and other lifestyle factors.

Workshops on Managing Fatigue and Fitness will be run by the MS Society physiotherapists.

We are also hoping to provide cooking events – where a group comes together to watch and prepare a healthy meal, then share the pleasure of eating it!

A travel night is also in the planning stages – with consultants discussing suitable destinations, accommodation and activities, with advice on travel insurance and other useful tips.

Further details on these events will be advertised on the MS Society webpage, MS Facebook page (www. facebook.com/MSSocietyofSANT), the e-newsletter and emails/letters to clients.

If you would like to register an early interest in any of these events please contact: Mary-Anne Edge, Coordinator Education and Peer Support T: (08) 8203 6600 E: medge@ms.asn.au

And if you have any suggestions to help with the planning of education seminars and workshops please pass these on to Mary-Anne Edge, as above.

12 | 2013 MS Network Magazine 19

Peer support update

Peer support update The Peer Support program continues to connect people with MS to each other to provide opportunities to meet and discuss your MS with others experiencing similar issues. There are a number of programs and groups currently in action – please read on for more information!

New Peer Support Groups There have been requests to establish some new support groups and to re-invigorate some ‘old’ ones.

The hotel has an indoor playground next to the bistro, further meetings will be planned on this day. n

City-based for workers A group for those who are working,

Planning has started for new support groups in: n

Alice Springs

n

Copper Triangle/Moonta area

n

Clare

n

Port Pirie

n

Whyalla

n

Darwin

It is likely that meetings will be in the mornings on weekends at a cafe for coffee/brunch, possibly at Palmerston and in the city. There will be a Christmas dinner on Sunday 15 December, 6 pm at the Darwin Sailing Club, Fannie Bay, to plan the 2014 meetings. Contact Sarah Schubert on 0439 885 604 for more details. n

Parents with Kids A group of parents met on Saturday 23 November at North Adelaide Aquatic Centre Playground to discuss the format and location of support groups in 2014. Options include a playgroup for those with pre-school children and a coffee/ meal get together for those with school-age children. The next event will be Saturday 1 February 2014, 1.00 pm at the Esplanade Hotel, cnr Jetty Road, Brighton.

20 MS Network Magazine 12 | 2013

to meet monthly for a meal in eastern Adelaide 6.30 pm on a Wednesday. Please contact Jess Raeburn on 0403 155 696 if you are interested in joining. n

Newly diagnosed A ‘pop-up’ group for 4–5 months,

Online support 158 members and counting!

You might find it a bit nerve-wracking to attend a group or speak with someone in person about your MS. Maybe you’re just not ready to speak or meet a person with MS yet, but would like some advice anyway.

Perhaps distance is an issue if you live in a rural or remote area, or you may be too ill to leave the house.

open discussions facilitated by MS staff and people living with MS, about managing health and lifestyle so that you can get on with your life.

Once a group forms the location of meetings will be decided, most likely to be held early evenings.

Looking for members wishing to join refreshed groups in: n

Unley or Eastern Suburbs

n

Adelaide Hills – Stirling area

n

Western suburbs or Port Adelaide

n

Glandore

If you are interested in joining or getting more information about any of

Online support might be an option for you. It’s convenient – log in whenever or wherever you like. This is a closed forum, only accessible to members.

You can find it at www.facebook.com/ groups/MySocietySANT/ – just request to be a member.

Mentoring We have an excellent group of supportive, caring mentors who are more than happy to talk with other people with MS. They also have MS, so odds are they have had some similar experiences to you.

these groups, or wish to start a group in your own area, please contact Mary-Anne Edge T: (08) 8203 6600 E: medge@ms.asn.au

If you’re hesitant to join a group or would just like to speak with someone privately, please contact the MS Society on (08) 7002 6500 to be connected to a peer mentor.

Peer support update

‘I was recently told why talking to other people with MS is so helpful – because no one else seems to get it.’

Join a support group and talk to others who do ‘get it’.

Peer Support Groups meet in the following areas: Location

Day/Time

Venue

Group Coordinator

Barossa

3rd Thursday each month, 11am Tanunda/Nuriootpa

Denise Hoffman (08) 8565 6245

Hard Yakkas (Salisbury)

Last Wednesday each month, 12pm

Café Aqua, Salisbury

Tallia Coulter 0403 766 157

Fleurieu

Random Tuesdays, 12.30pm

Rotated around Fleurieu eateries

Jill Masters (08) 8555 0358

Gawler

2nd Monday each month, 10am Gawler Women’s Health Centre Helen Hoppman 0403 295 348

Modbury

Last Tuesday each month, 10am Independent Living Centre, Gilles Plains

Jennifer Cotis 0407 888 492

Clovelly Park

4th Friday each month, 12pm

Tonsley Hotel, South Road, Clovelly Park

Christine Sutherland (08) 8276 3779

Mount Gambier

1st Friday each month, 12pm

Commercial Hotel, Commercial Street West

Jenifer Carpenter (08) 8738 2343

South East

3rd Thursday each month, 10.30am

The Settlers Café, Naracoorte

Samantha Loechel 0427 662 156

Noarlunga

1st Thursday each month, 12.30pm

Various lunch venues

Virginia Stanfield (08) 8382 5244

3rd Thursday each month, 12.30pm

GP Super Clinic, Noarlunga

Burnside

3rd Thursday each month, 2pm Burnside Community Centre

Paula Hardy (08) 8379 8220

Port Lincoln

2nd Tuesday each month

Venue and time varies

Rick Cunningham 0427 999 029 Pamela Price 0427 824 145

Tailem Bend

Wednesdays, mid-monthly

Group member’s homes

Sue Griffiths (08) 8572 3914

Family members and carers are always welcome to attend If there have been any changes to your support group that we’re not aware of, please contact the MS Society to advise us of any updates. Please also let us know if you are interested in setting up a group in your area.

Overcoming Multiple Sclerosis Peer Support Group If you are on the Overcoming Multiple Sclerosis (OMS) program, or would like to learn more about it, you are invited to join a peer support group with a special interest in OMS. Meetings are held on the 3rd Monday of each month, 7 pm at Pembroke College. Please contact the group coordinator Pam Schartner on (08) 8331 9360 or email pschartn@iinet.net.au

12 | 2013 MS Network Magazine 21

Accessing South Australian Government funded equipment and services

Accessing South Australian Government funded equipment and services Overview The Department of Communities and Social Inclusion (DCSI) is responsible for funding and providing services for people with disability in South Australia.

Within DCSI, Disability Services is the department responsible for coordinating and delivering services to people with disability.

The role of Disability Services Once a person is registered with Disability Services they are assigned to a regional office and, in some cases, allocated an individual Services Coordinator. The staff in your local regional Disability Services office are responsible for coordinating all services and supports that you may require.

This may include reviewing personal care requirements, assessing the need for equipment or home modifications and referral to allied health services such as physiotherapy, speech therapy, dietician and psychology.

The role of the MS Society Sometimes Disability Services outsource parts of their work to other organisations such as the MS Society. In SA, the MS Society has an agreement with Disability Services that they will use our therapists when they need an Occupational Therapist or Physiotherapist assessment for someone with MS living in the metropolitan area.

These assessments are usually related to things like equipment, manual handling, home modifications or personal care requirements. Our staff carry out the assessment and then send a report to Disability Services with recommendations.

22 MS Network Magazine 12 | 2013

For those people with MS living in rural and remote areas of SA, our therapists are also available to provide advice via telephone to Disability Services staff and therapists working in your region.

It is important to understand that Disability Services make the final decision about what equipment and services they will fund and provide – not the MS Society.

The MS Society does not have funds to pay for equipment, home modifications or personal care – this is only available through Disability Services.

Disability Services registration A person must be registered with Disability Services BEFORE receiving any support or equipment.

It is important to note that: n

The registration process can take up to 6 months. This cannot be fast tracked unless a person’s situation is extremely critical.

A person will not be eligible to register with Disability Services based solely on their MS diagnosis. The registration criteria also require identifying some difficulty that requires assistance from Disability Services. Talk to our therapy staff if you are unsure.

n

Due to the long lead in time for registration, the MS Society recommends that a person complete a registration application to Disability Services as soon as they begin to experience any difficulties. Even if you believe the issue is minor, it is best to register for services as soon as possible due to the waiting times.

Department for Communities and Social Inclusion

Accessing South Australian Government funded equipment and services

MS Society Occupational Therapists celebrating OT week with a yellow and purple afternoon tea.

October 20th –26th was Occupational Therapy week. Did you know: n

n

n

A referral may then be forwarded to the MS Society, and a therapy staff member may then make an appointment to meet with you.

Contacting Disability Services Intake: 1300 786 117 (local fee only for country callers) Office Number: 8272 1988 Email: disabilityinfo@dcsi.sa.gov.au

Need more information or advice?

Call our ‘MS Assist’ Line on 1800 812 311 for further information or assistance with submitting a Disability Services registration application.

n

n

Between 1939 and 2011 the number of Occupational Therapists in Australia has risen from 3 to 15,000.

The use if occupation as therapy has a long history but the OT profession officially started in Australia in 1940 (WW2) to deal with wounded soldiers.

Now 15 programs graduate over 1,000 students a year and this will increase dramatically in the next few years with another 20 new programs soon to graduate students.

Between 1996 and 2011 the number of Occupational Therapist employed in Australia more than doubled.

So what do OTs do? Put simply we engage people to change the way they occupy their time in order to live the life they choose.

12 | 2013 MS Network Magazine 23

Thank you!

Thank you!

Kind donation of Motorised Exercise Pedals to Physiotherapy Department

the availability of intense rehab to our clients from Greenacres and (in the past) Elizabeth sites. Sarah has shown her dedication and passion for her profession with endless patience, guidance and mentoring of the students.

One of our clients, Jane Lyall, sadly passed away on 8 July this year. Jane had been attending the MS Society every week for many years and I had the pleasure of working with her with the motorised pedals for the last 9 years.

Jane’s program involved leg and arm work and she always had a sunny smile and never complained.

The whole Physiotherapy Department sadly misses her happy disposition and seeing her every week.

Jane was an active volunteer with the Society for many years and I first met her when I was volunteering too in the 1990s.

Jane’s Mother, Margaret , has kindly donated Jane’s home motorised exercise pedals to the MS Society of SA & NT so they can be included in the hire program and so benefit other clients.

A plaque will be placed on the pedals to acknowledge this kind donation by the Lyall family in memory of Jane.

Anyone interested in hiring our Motorised Exercise Pedals for 4 weeks for home use, please contact the Physiotherapy and Exercise Physiology Department of the MS Society on (08) 8360 0800.

Sandy Andrews Physiotherapy Assistant 24 MS Network Magazine 12 | 2013

Thank you and goodbye – Sarah Woodard It is with great sadness that I am informing everyone that Physiotherapist Sarah Woodard has resigned from the Society.

Sarah has been an integral part of the team starting nearly 5 years ago as a student volunteer (in the pool and with the vibrogym program) that led to a part time physiotherapy assistant role.

After completing her university studies, Sarah was employed full time as a physiotherapist and we have never looked back! Over the years her role has encompassed many things including the Reynella exercise group, aquatic physio programs and the treatment, rehabilitation and management of individual clients.

More recently over the last two years Sarah has been responsible for the UniSA Student Physio Rehab Clinic.

This has been a huge commitment and tremendous effort that has seen

‘No matter what job, I am sure her passion for learning, high standards and genuine care for clients will see her succeed.’

I strongly feel that such a positive experience for students early in their career can only result in greater understanding and awareness of the Society, MS and the benefit that physiotherapy can provide to those with neurological conditions.

This will ultimately benefit our clients who may have to deal with these students as future health professionals.

In leaving us, Sarah hopes to pursue a job a bit closer to her new home and also to expand her experience and knowledge outside of MS and the community setting. No matter what job, I am sure her passion for learning, high standards and genuine care for clients will see her succeed. Although she will be greatly missed by clients and staff alike, we wish her all the best in her future endeavours and we are confident that our paths will cross both professionally and socially in the future.

All the best Sarah and thank you for all your hard work and commitment over the years!

Thank you!

If not for this, many clients would not be able to access the MEP home hire program as coming to Greenacres to pick up the equipment themselves is often not an option. Rodney also took on the delivery component of the job without any consideration of his own travel costs.

Thank you to Rodney – Greenacres Volunteer The Physiotherapy & Exercise Physiology Team would like to extend a huge thank you to our volunteer Rodney.

Rodney joined us at Greenacres at the beginning of 2012. He has been working predominately with the Motorised Exercise Pedal (MEP) Home Hire Program. This requires him to contact clients regarding hire of MEP, collect hire fees, check that MEP are in good working condition and organise drop off/pick up of MEP.

‘Rodney goes about his work with minimal fuss and maximum efficiency.’

Initially he coordinated these deliveries for our maintenance man Dennis however, with increasing pressure on Dennis’ role, Rodney took on the delivery component himself.

Rodney goes about his work with minimal fuss and maximum efficiency.

Without him, the MEP program would not be running. Rodney is also very happy to help with numerous “odd jobs” around the office, eg. moving of furniture, putting up notice boards, installing hooks/pegs on walls and “fixing” of many things!

Unfortunately for us, Rodney is moving away and will not be able to assist us anymore. On behalf of the staff and clients who have worked with him, I would like to say a big “THANK YOU” and wish him all the best in his future endeavours.

Maxine Brooks – Thank you!

Maxine has been a very reliable and committed volunteer for the MS Physiotherapy department for over 6 years. Unfortunately, she has decided that she will not be able to continue with us once we move to our new office at Enfield.

We first came to know Maxine through one of our aquatic therapy programs and it was this contact that led Maxine to volunteer with the Society.

Initially Maxine started helping out with some of the administration tasks related to Disability Services Aquatic Therapy program, however we soon realised she had quite an adaptable skill set and signed her up for more!

Maxine was instrumental in much of the administration work involved with the early years of the MS 24 hr Megaswim and the Go for Gold Scholarship Program.

In this role she had an amazing ability to translate the words from a client’s application into vibrant and interesting stories to capture people’s imagination and tug at their heart strings on presentation night.

More recently, Maxine has been “manning” our busy front desk at the Greenacres reception once a week.

A wide variety of tasks are required in this role and we greatly appreciate her dedication to this.

So it is with great sadness that we farewell Maxine and particularly thank her for all her hard work, welcoming personality, friendly face and her longstanding commitment to the Society. We wish her the best of luck in her future endeavours.

Margot Strelan Senior Physiotherapist 12 | 2013 MS Network Magazine 25

Multiple Solutions

Multiple Solutions On the 18th of May last year I was riding my bike on the way home from work and was hit by a truck on South Road.

I remember waking up at Flinders Medical Centre where I stayed for 6 days. I was then transferred to Hampstead Rehabilitation Hospital and remained there for a further 3 weeks. I received lots of care which I was not used to as I was used to dealing with things myself.

I have Cerebral Palsy and now a brain injury. I was referred to Multiple Solutions and the Workplace Solutions program to help me get back to work.

Prior to my accident I was working fulltime at Conma Industry. Multiple Solutions helped me regain my confidence. They didn’t tell me what to do, but they were there to support me every step of the way.

Multiple Solutions not only helped me return to work, they also helped me find a GP after not seeing one for years. They provided with information about services and supports that were available to me. My Workplace Support Consultant informed Hampstead about my progress and my hours at work gradually increased. I now have the tools to deal with situations better even if they don’t always go the way I would like.

When I first started with Multiple Solutions I said to my Workplace Support Consultant that everything was taking a long time. My Workplace Support Consultant told me that when I look back at my recovery, I would not realise how fast it went. I didn’t believe her at the time, but I now know what she said is true.

Thank You Multiple Solutions for all your help.

John Laidlaw 26 MS Network Magazine 12 | 2013

Support for workers and the self-employed Does your health impact your work? Does your work affect your health?

Multiple Solutions can you help you manage both by:

n

n

Funding workplace aids, equipment or modifications Helping you develop strategies to continue working successfully

Reducing stress and fatigue at work helps to also increase the energy you have for family and home.

Contact Workplace Solutions staff to ask about this free workplace support: North (08) 8203 6600 South (08) 8198 1400 Email: wpsolutions@ms.asn.au

MS Bookshop reviews

MS Bookshop Reviews Mick, Jane and Me – Living well with MS

by Carolyn Cordon A self published book of poetry about living well with MS Truthfully the last time I read poetry was in English 1 at Uni – and that was a long time ago – but I do remember being asked not to re-enrol in English2 after I declared Chaucer to be a **** poet in my final assignment.

The last time I voluntarily read poetry was during a brief teenage crush when I was introduced to Tagore’s Gitanjali (they were the days of Indian sandals, jewellery with bells… ).

Carolyn’s memoir, poetically speaking, was on my bookshelf for 2 weeks before I opened it – I was dusting around it so thought maybe I should have a quick look. Duster abandoned, an hour later I’ve concluded that this is an incisive and delightful read – not what I remembered to be poetry.

An impish sense of humour that delivers some facts and realities about living with MS without descending into the pits of doom and gloom is the tone of this book from the first to the last page. This is written by someone whose middle name must be resilience. How to get on with your life and make the best of it, actually more than that – how to see the funny side of what others may find tragic and how she continues to stay positive and happy when others might wail and weep – all told with that impish sense of humour.

Laugh out loud when you read Chapter 6 – ‘Things not mentioned in polite company’ and laugh at the clever cartoons that greet each chapter.

There are plenty of laughs in this slim volume and you can’t help but admire Carolyn’s ability to remain upbeat where others might wilt. Little is hidden about what it’s like to live with MS and there’s plenty of help and guidance together with lots of facts.

Better than reading some of those Fact Sheets that can be scary reading.

For anyone newly diagnosed with MS this book has a wealth of information, for those with a family member with MS it is also an invaluable little book. The sense of understanding of what it is like to be someone with MS comes through as a support for anyone who might not be managing very well.

I can see the potential for a follow up book written in the same vein about being the partner of someone with MS. There’s a really big gap there!

However, I digress.

This little book won’t take up much of your precious time to read, but it’s time well spent – a down to earth look at life with MS and how the power of the mind, being positive, happy and resilient all contribute to living well with MS.

‘For anyone newly diagnosed with MS this book has a wealth of information, for those with a family member with MS it is also an invaluable little book.’

Pam Schartner If you would like to purchase a copy of ‘Mick, Jane and Me – Living well with MS’ please call Carlyon on 0418 806 490 or email jeebers@aussiebb.com.au 12 | 2013 MS Network Magazine 27

MS Bookshop reviews

MS Bookshop reviews continued Carry a Big Stick

by Tim Ferguson Tim Ferguson – the Doug Anthony Allstars/ Edinburgh Festival and “Don’t forget Your Toothbrush” – an Australian icon of provocative comedy.

I like a book that makes me laugh on page 1 – a really good sign. There are plenty more laughs as you follow his version of his rise to fame, tackling the big barriers of breaking into the comedy venues and the hard road to becoming a success.

I gained a new respect for the man, not just the comedian.

I expected the book by Tim and his experience of MS to be full of funny irreverent anecdotes about falling over, slurring his words, dropping things and the like.

I was about half way through the book and it was getting hard to tell that he had MS. When I had turned the last page I had a sense of disappointment – it wasn’t a book about Tim Ferguson having MS – it is a book about Tim Ferguson.

Just some mentions early on about ignored symptoms, a realisation that his Allstars life was affecting his health and the blokey thing of not wanting to talk to a doctor about the growing list of symptoms that signalled something amiss on his body.

Only towards the end of the book is there really much said about him 28 MS Network Magazine 12 | 2013

having MS. And he doesn’t make a big deal of it. The blurb about the book tells about his aversion to buying his first walking stick and because it meant that his disability had gotten to the point where he was no longer safe without an aid – a stubbornness of not wanting to be seen as having a disease.

A few days later I realised that this story is being told by a person who said ‘MS does not define me’ – he had kept his MS a secret for a very long time from most of his family and friends and refuses to whinge about having MS because he can’t change that. That’s what I call a powerful set of messages.

A good book is one that makes you both laugh and think.

Pam Schartner

‘…this story is being told by a person who said ‘MS does not define me’ – he had kept his MS a secret for a very long time from most of his family and friends and refuses to whinge about having MS because he can’t change that. That’s what I call a powerful set of messages.’

Client Stories

Client stories One of the first things I thought of was my medication. The longest I had ever gone in-between Tysabri infusions was 5 weeks. What we were hoping to do on this trip was travel up the middle of Australia, head across to the Kimberley via the Gibb River Road, travel down the Western Australian coast, visit Perth then cross the Nullarbor back to Adelaide. Not something we could really do in 4–5 weeks! Looking at the distance, along with all the things we wanted to see and do, we would probably need between 3 and 4 months!! Was this even a possibility?

Julie Morcom The best way to beat your winter blues!!

Winter. Not one of my favourite seasons but having been born in August, I am used to always having a cold, wet and miserable day for my birthday.

So when thinking about my 50th celebrations earlier this year, I decided that what I really would prefer to do was head north to the sun and warmth to escape winter and all the whoo-haa associated with turning 50. Broome, in the Kimberley area of Western Australia, was calling my name!!

I contacted my neurologist and ran the trip idea past him. “Sorry Julie, you will need to continue your infusions during your trip away” he said. “Darn it”, I thought. “OK, so where can I get them done?” I asked. I was advised that the infusions could only be done at Alice Springs, Darwin, Port Hedland and Perth hospitals. OK, I can work with that, I thought.

But then nothing nice ever really happens to me in winter. It was a miserable rainy day in late July 1993 that I was diagnosed with MS – three weeks before my 30th birthday.

Over the past 20 years, my medications have included Betaferon (11 years) and Tysabri, which I changed to just over 6 years ago. The latest change has proven to be very successful for me as I have not had one relapse during this time and my MRI’s are currently showing no active lesions. I have also been able to increase my fitness slowly over this time, which has been brilliant.

12 | 2013 MS Network Magazine 29

Client stories

Client stories continued I got in contact with Glenda, one of the nurses at the MS Society and asked if she could help me get in touch with the people I needed to speak to, to arrange my appointments. I thought if I broke the trip into month long chunks, I could try to work out where we would be every 4 weeks and organise the appointments accordingly. Alice Springs was too early in the trip as I would have had my last infusion done in Adelaide just days before we left, so it looked like Kununurra would be the first place. Firstly, I looked at flights from Kununurra to Darwin and return and soon realised that I would need to overnight in Darwin as the flights did not work in with the time it would take to include a hospital visit. I then looked at accommodation close to the airport and hospital but I could not find anything! Oh, this was all starting to become way too hard!

I then decided to look at where we would be in another 4 weeks time.

Leaving Kununurra, we wanted to head across the top of Western Australia via the Gibb River Road, a dirt road almost 660kms long. That would get us to Broome and my next infusion. Again, the first thing I did was look at flights but getting to and from Darwin was again very difficult – more so than in and out of Kununurra. There was not even a flight every day!!

So, in desperation, I looked at Perth.

Yes, this could work. From both Kununurra and Broome the flights were more frequent and regular to Perth, so I asked Glenda for some information about MS infusions in Perth. From the information Glenda received from the MS Society in Perth, I was able to contact the correct person at Sir Charles Gardiner Hospital.

30 MS Network Magazine 12 | 2013

‘What we were hoping to do on this trip was travel up the middle of Australia, head across to the Kimberley via the Gibb River Road, travel down the Western Australian coast, visit Perth then cross the Nullarbor back to Adelaide.’

My neurologist sent a referral through to an associate in Perth, but after his secretary contacted me to arrange an appointment (!) I was advised by the hospital contact that I would not need to see him and that I could fly in, go to the hospital, have the treatment then fly home – yay!!

So I went ahead and booked 3 Tysabri appointments at Sir Charles Gardiner Hospital (SCGH), booked 2 return flights – one from Kununurra and the other from Broome (for the third appointment, we would be in Perth) and I also booked some accommodation at a nearby university that was close enough to just walk to the hospital. I was advised by the hospital that all Tysabri appointments are done in the afternoon so I would need to fly in, overnight, go to the hospital, have the treatment, go back out to the airport and fly back.

At the beginning of June, we left on our trip and everything went to plan, but… (there’s always a ‘but’, isn’t there!).

When I got to the hospital for my first infusion, I was told that I would need to go to the hospital pharmacy and get my prescription filled. My prescription… what prescription??? In Adelaide I don’t have a prescription, the medicine is just there, and I thought my neurologist would have sent through a script. No script!! Well, after a few delays I was able to get the script filled, and PAID for! Again this was something that does not happen in Adelaide but at SCGH you buy your medicine before each appointment – at a cost of a PBS script- then go to your appointment!!

And yes, I did make it back in time to make my flight – just!

The trip away was fantastic. We were away for just over 3 months and my health did not miss a beat. I was able to do so many bushwalks in the National Parks that we visited that my husband commented on how much fitter I am now compared to a few

Client stories

years ago. We went snorkelling every

there were some hiccups but it was all

day the whole way down the WA

sorted quickly and efficiently by the

coast- sometimes twice a day! This

hospital staff – thank you.

really was a great trip.

The only thing I would do differently

I am so glad that I did all the homework

next time is travel with the script in

before we left home and that I kept

my ‘hot little hand’ and maybe see if I

looking at different options and ways

could talk to someone who is currently

of fulfilling my dream of travelling for

a Tysabri patient at the hospital I am

longer than 5 weeks at a time. Yes,

going to travel to (in this case SCGH).

‘I am so glad that I did all the homework before we left home and that I kept looking at different options and ways of fulfilling my dream…’

This way I would have known about getting a script filled before the appointment and I would have made sure I had a script!!

Message learnt: do not let your illness stop you from doing the things you really want to do in life. Having MS and being on Tysabri is a part of my life but it will never define my life. I have a travelling spirit and I now know I can keep doing something that I truly love – and that is a good thing for my mind, body and spirit.

12 | 2013 MS Network Magazine 31

Client stories

Client stories continued hard to change profession now.

Michelle Grose I have possibly the worst job that someone with MS could have.

I’m a surveyor which involves working on construction sites – primarily outside in the heat.

This could mean helping build things like a pump station or a wave energy convertor at different locations locally or Australia wide.

My job is basically to set out what needs to be done and then the construction team take over to build it. It is physically demanding work – I know it is probably the wrong profession for me, but I love it.

Work is one of my passions.

I’m not sure how I got into surveying.

I was always good at maths at school and then when I went to university, I kept up my maths and started the surveying degree. I have now been working in the industry for 20 years.

I would like to do something that’s easier on my body, but I feel it’s too

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I can work anywhere, all over Australia, and long hours. Sometimes for up to 60 hours a week. I might only get a day off every fortnight, which I do struggle with at times. It has been harder since my diagnosis.

The company I work for try to understand about my MS but it’s not always easy. A few years ago they sent me to Whyalla in the summer, which was really difficult for my fatigue. Thankfully now the majority of my clients are in Adelaide so I am able to stay local. I think the hardest thing at work is my colleagues or clients who see me every day forget I have MS because I don’t look sick, and people who get sick get over it.

It’s the continuity of having MS that people tend to forget about.

There have been times when I have struggled with MS at work and felt like giving up. When I was placed in Whyalla I really struggled with the heat and fatigue. As soon as it hits 25

degrees, my body starts to cook from the inside. At the time I felt like giving up work, but I knew I couldn’t – I have a mortgage and the usual bills to pay.

My MS nurse, Pam, rang to check up on me around this time and she must have caught me at a bad moment and I just said ‘I can’t do this anymore’ and she put me onto Mary-Anne from Multiple Solutions, who organised assistance through the Workplace Support program.

They were able to arrange a fridge for the car and a battery backup along with a couple of cooling vests. This highlighted to me that the support is there if I need it. Not just the medical support I receive from Pam, but also support to keep me working. Cooling vests don’t solve all the problems, but they help a lot. This was a really great support for me. I don’t think employers realise these things are in place to help people manage their conditions.

When my boss found out that I needed some assistance I’m sure he thought

Client stories

So that’s the diagnosis I was given.

The only treatment for this is steroids.

The condition did seem to ease, but then it would come back especially when I was stressed and in hot weather, which all makes sense now.

There were little reminders that it was there all the time that things weren’t perfect, but no big reminders saying ‘yeah I’m here’.

It wasn’t until June 2010 that I was diagnosed with MS after a bout of optic neuritis. I was at work and I couldn’t read the staff when I was doing some levelling. Previous to this he would need to pay for it. He was quite surprised to find out he didn’t.

The fatigue has been around for years.

I remember working in Melbourne in 1998 and arriving home and just sitting in the car – I couldn’t move. I think it’s one of those things I’ve gotten used to.

But I slow down a lot more now. I know that resting is going to do me more good that pushing through it so I tend to rest more than I have done in the past.

It wasn’t long before the fatigue started that I remember the first time I got sick. It was in 1997 when I was working in Queensland. At the time no one could figure out what was wrong with me, they thought I had Ross River Fever for a while. Knowing what I know now, I know what it was – the first signs of MS emerging.

Then when I was working in Sydney in 2000, I lost the feeling from my armpits down. I was sent to a neurologist who referred me to have all the tests and they did check for MS.

‘MS hasn’t stopped me from working or doing other things I enjoy. I just finished an online diploma in photography.

I have always had an interest in photography so I really enjoyed doing the diploma.’

my only symptoms had been sensation issues in my legs and hands, so to have something happen to my eyes was a real concern.

I wasn’t too upset or bothered when I was diagnosed; it just explained things and made more sense. There was more of an explanation for me when things happened with my body. There is a strong MS network out there and there is treatment available, which makes it an easier diagnosis to deal with.

MS hasn’t stopped me from working or doing other things I enjoy. I

I was given a lumbar puncture – which didn’t show anything. An MRI did show lesions on my brain, but also on my spine which, along with my other symptoms, were consistent with transverse myelitis. The neurologist thought that because there was no effect to my muscles, only sensation issues, that it wasn’t MS, it was transverse myelitis.

just finished an online diploma in photography. I have always had an interest in photography so I really enjoyed doing the diploma. I was asked to photograph a wedding recently, which was great fun, but so much hard work. It was a favour for a friend and a fantastic day, but the next day I slept until 4pm! I was completely worn out by it.

12 | 2013 MS Network Magazine 33

Client stories

Client stories continued We had 11,000 acres of land including 2,500 acres of durum wheat, wheat, oats for hay and barley and as many as 80 beef cattle and nearly 6,000 Marino sheep. I worked on the farm with my family until 2004 when we decided to sell the farm.

John Hannan My name is John Hannan and this is my story.

I was born in Port Pirie on the 8th of October 1966. I lived on my parents’ farm where we would tend both livestock and crops. The farm had been in my family for over 125 years spanning five generations.

34 MS Network Magazine 12 | 2013

It’s hard to really pinpoint the first indication that I had a problem. Small stumbles here and there – including one that surprised me one sunny day on Jetty Road in Glenelg were considered just a side-effect of getting old – I actually felt like I looked drunk.

Until one day after my radio show, I was coming out of a local petrol station and I collapsed. I had lost control of my body for a split second and I found it rather difficult to get back up on my feet.

When I went to my doctor he recommended I see a neurologist as soon as possible. I had an MRI on my brain and spine after which the doctor told me I had MS. I didn’t quite know what to think at first and my family was pretty shocked. I had to get used

to the fact that I couldn’t do the same things I used to anymore and for even small things during my day I’d need assistance. One of the bigger changes was that I could no longer drive – my licence was revoked in November last year and I have to rely on access cabs to get around. It was frustrating, but it’s something I had to deal with.

Thankfully, my condition has never stopped me. From the age of three my dream was to be on the radio. During 2004 I completed a radio course after many people said I had what they termed to be “the gift of the gab”.

My only media experience to that point was giving weather and crop reports to the every now and then to the local media. Short stints in car sales and real estate between 2005 and 2007 would eventually lead to John Rohde – the station manager of Port Pirie radio station Trax 105.1fm – offering me a chance to have my own show.

This was the opportunity I’d been waiting for and a chance to realise my childhood dream.

Client stories

Three years ago, I started my weekly show “Johnno’s Country Jukebox” that I still do to this day. I’m a huge country music fan and play all sorts of modern country and new country from the last decade. Besides being a fantastic way to connect with the community, the show has given me the opportunity to meet and interview all sorts of music artists – including people like Lee Kernaghan, Beccy Cole, Kasey Chambers, and Troy Cassar-Daley. Interviewing these celebrities is one of the highlights of my job. This is a voluntary position that has not been affected by my MS, but has instead become a much larger part of my life. It’s one of those things I really look forward to during my week.

The only concession I’ve had to make is moving my show from 8-11pm on Tuesdays to 2-4pm on Wednesdays after I had a fall one Tuesday night after my show, and struggled getting back up. Most of my listeners know about my condition but I don’t go on about it – I never look for sympathy.

‘Three years ago, I started my weekly show “Johnno’s Country Jukebox” that I still do to this day. I’m a huge country music fan and play all sorts of modern country and new country from the last decade.’

Having multiple sclerosis has given me a different perspective on many things.

I definitely understand where disabled people are coming from and how hard it can be. I’m thankful that throughout my journey, my family, friends and healthcare professionals have all formed a fantastic support network for me. For my efforts I received a certificate on behalf of the Disability

Services in Port Pirie on Disability Day in December last year.

One of my longer term goals is to travel to various country music festivals.

In 2014 I hope to be at the Mildura Country Music Festival, in 2015 my aim is to attend the Tamworth Country Music Festival and in 2016 I am hoping to attend Rock the Hunter in the Hunter Valley – another country music event.

Ahead of me is a lot of planning and saving to get there, but it’s something I really want to do because I’m not going to let my MS slow me down.

I’m a firm believer that no matter the circumstances, keep focused on your goals and what you want to achieve.

By contributing your story to Network, you can inspire others to be positive and active whilst living with MS. If you’d like to provide your story, please email feedback@ms.asn.au or phone (08) 7002 6500.

12 | 2013 MS Network Magazine 35

Community fundraising

Community fundraising A big thank you to all of our Community Fundraisers who assisted us in raising much needed funds for the MS Society.

In 2013 the MS Society have had over 100 people/groups fundraise in the community on behalf of the Society, raising over $60,000 to help people living with multiple sclerosis.

The Ansett Down to Earth Club have been long time donors to the MS Society. Each year the ex Ansett flight attendants hold a movie night where part proceeds are donated to the MS Society.

The goal is simple – to provide 100% of services to 100% of people living with multiple sclerosis.

Quiz nights, bike rides, canoeing the length of the Murray River, girls nights, horse rides, company birthday parties and workplace collection days are just a few of the ways people have raised funds for the MS Society. We’ve featured a few great stories below.

In May 2013 Country Home Advocacy Project, Lower North (CHAP) started holding weekly themed casual days to raise money for the MS Society.

To hold your own fundraiser for the Multiple Sclerosis Society please contact Sonya on srowell@ms.asn.au or 7002 6500.

The ladies in the Clare office have a rather close connection to multiple sclerosis and are aware that every little bit helps people living with MS.

Murray 4 MS began their journey to canoe 2185 km down the Murray River, starting in Albury Wodonga, NSW on 4 March and completing their journey in Goolwa, SA on 18 May. Darren says “I have been supporting the MS Society for some time now, however, a close friend was diagnosed with the disease in 2011, and I knew I had to do something more.”

36 MS Network Magazine 12 | 2013

Makenzie and Madison are some of the youngest champions of the MS cause. At age 5 Makenzie held her own fundraiser for the MS Society because she “wants to help people”.

Makenzie rode her bike 8km from Trott Park to Morphett Vale with her Dad by her side. This year Makenzie and Madison held a movie day with their friends and family. These two champions have raised over $1,200 for the MS Society through their fundraisers.

Community fundraising

Torrens Transit turned 13 in July this year, at their birthday celebrations some 500 employees and their partners danced the night away with fantastic entertainment provided by the evening’s MC, Amanda Blair and a number of talented artists including the very talented David Campbell.

A write up from Madison and Makenzie’s Mum, Kelly.

Fundraising is a big deal in our household. Both Madison and Makenzie have helped their Mum organise fundraisers for various charities over the last few years. A few years back, Makenzie approached me asking to do a fundraiser of her own.

We sat down and discussed that it wasn’t just a matter of asking people for money. There were procedures to follow. First she would have to decide on who she would raise money for.

This was a very easy decision for her.

Their Nana’s sister, (my Aunty) has MS. I then told her we had to register with MS so they knew we would be raising funds for them. It was then up to Makenzie to decide how she was going to raise money. At the time she was almost six and decided to do an eight kilometre bike ride with her dad and get people to sponsor her.

She raised $614.60.

It was about 18 months later that both my girls, Madison and Makenzie decided to do a fundraiser together.

Again there was no question that the money raised would go to MS. After many ideas, it was decided that a movie night would be how the money

Raffles, and auctions saw a number of generously donated items ranging from a children’s swing set to an autographed Crows Guernsey to big screen TV’s go under the hammer with $12,096.20 being raised. Torrens Transit matched the amount of money raised by its employees and proudly donated a total of $24,192.40 to the MS Society. would be raised. They sold over 100 tickets to Monsters University at Wallis Cinemas. Both of the girls hosted the event and amazed the crowd with their confidence in speaking to them on the microphone. They explained why they were fundraising and then drew out the raffle tickets. The total amount raised for this fundraiser was $696.00.

Both my husband and I are extremely proud of our selfless girls and encourage them to fundraise in the future.

Robert Tonkin spent his October long weekend in a very different way to many others. While most people were off holidaying or enjoying the extra day at home, Robert was busking at the Stansbury markets for the MS Society. Robert raised over $400 due to generous donations from the public enjoying his busking.

The Veterans and Ladies Cycling Club of SA have been making fantastic contributions to the MS Society since 2000. Each year the club dedicate one of their bike rides to the Society with proceeds made on the day donated.

12 | 2013 MS Network Magazine 37

Community fundraising

38 MS Network Magazine 12 | 2013

MS Mighty Swim

MS Mighty Swim TEAM MS and TEAM MS – staff, family and friends TEAM MS is for people with a disability. People of any ability can swim in TEAM MS as they can break the rules and can have helper to assist if needed.

Registration fee for TEAM MS is $20.

If you are connected with the MS Society in any way: member, client, family, carer, friend, staff or student but do not have a disability please register for TEAM MS staff, family and friends.

We are looking for swimmers, helpers, sponsors, timekeepers and lap counters to ensure that TEAM MS is even more successful than last year.

Register online at www.msmightyswim.com.au TEAM MS Contact: Lee O’Connell MS Society Physiotherapist

12 | 2013 MS Network Magazine 39

12 | 2013 MS Network Magazine

Claire – MS Assist.

Locations MS Assist 1800 812 311 Head Office/Mawson Lakes Endeavour House Technology Park Module 6E 11–15 Fourth Avenue Mawson Lakes SA 5095 PO Box 377 Salisbury South DC SA 5106 P (08) 7002 6500 F (08) 7002 6599

Brighton 7A Sturt Road Brighton SA 5048 PO Box 275 Brighton SA 5048 P (08) 8198 1400 F (08) 8377 0711

Christies Beach

Modbury

Level 1, 111 Beach Road Christies Beach SA 5165 PO Box 885 Noarlunga Centre SA 5168

31–33 Smart Road Modbury SA 5092 PO Box 525 Modbury SA 5092

P (08) 8392 0100 F (08) 8392 0199

P (08) 8203 6600 F (08) 8203 6699

Darwin

Salisbury

Nightcliff Community Centre 11/18 Bauhinia Street Nightcliff NT 0810 PO Box 867 Nightcliff NT 0814

6–8 John Street Salisbury SA 5108 PO Box 1069 Elizabeth Vale SA 5112 P (08) 8256 3700 F (08) 8256 3749

P (08) 8948 5300 F (08) 8948 5344

Woodville Enfield 273 Main North Road Enfield SA 5082

51 Woodville Road Woodville SA 5011 PO Box 16 Woodville SA 5011

P (08) 8360 0800 F (08) 8360 0899 P (08) 8345 8700 F (08) 8268 4224

Morphett Vale

www.facebook.com/MSSocietyofSANT www.twitter.com/MS_SA_NT

Unit 3 204 Main South Road Morphett Vale SA 5162 P (08) 8187 2100 F (08) 8187 2190

www.ms.asn.au | The magazine of the Multiple Sclerosis Society of SA & NT