03 | 2013 MS Network Magazine
Network
News Recipes 2013 MS Mighty Swim TEAM MS – A mighty bunch of awesome achievers Take the plunge Our people Why I volunteer Relationships and disclosing MS Peer support update Workplace Solutions Client stories Image: Murray 4 MS
Fundraising
The magazine of the Multiple Sclerosis Society of SA & NT |
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www.ms.asn.au
In this issue
In this issue From the Editor................................................................ 3 CEO report............................................................................. 8
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News................................................................................................9 Recipes......................................................................................14 2013 MS Mighty Swim....................................... 16 TEAM MS – A mighty bunch of awesome achievers..................................... 18 Take the plunge........................................................ 20 Our people........................................................................23 Why I volunteer...........................................................25 Relationships and disclosing MS................................................................ 26 Peer support update..........................................28 Workplace Solutions......................................... 30 Client stories...................................................................32 Fundraising........................................................................38 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.l
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MS Network Magazine 03 | 2013
From the Editor
From the Editor with stem cell treatment. He’s pictured with me at the MS Mighty Swim below. You can read his story on page 36.
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Kevin Zeuner is our other client story this month. Rob, who works for our employment arm Multiple Solutions, put me in touch with Kevin after helping him with some workplace modifications at his workplace. It was great meeting Kevin and hearing about his workplace problems and how they were overcome with a great outcome for all parties.
20 Hello everyone, This long, muggy summer is nearly behind us now, as is the first quarter of 2013, it has flown for us at the Society!
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The cover stars for this edition are the Murray 4 MS team. Darren will be canoeing 2185km down the Murray with his wife Michelle to raise money for MS. We will keep you up-to-date on their journey through Facebook and in our e-newsletters. If you live in any of the towns on the Murray they will be passing through, why not show your support and head down to cheer them on!
Just before going to print I was thrilled to get letter from Annie Sobecki and her daughter, Para Equestrian Elizabeth Sobecki. Lizzie has just come back from Hong Kong where she had the honour of riding for Australia. She has had a busy 6 months, and is such an amazing girl – well done Lizzie! You can read her letter on page 4. Until next time!
Renee Meredith Editor Network MS Society of SA & NT Inc feedback@ms.asn.au
Our client stories this month are from Jesse Frick and Kevin Zeuner. Jesse is a huge supporter of the MS Society, he has been the face of an MS appeal, he is a member of the PwMS committee and he often features in our marketing material. It’s always great fun and a guaranteed laugh catching up with Jesse, but I didn’t realise what a talented musician he was! He recently recorded his first CD, which has a Ben Folds Five vibe. It’s definitely worth a listen and you can buy a copy from our website. Jesse chatted to me about the CD and his recent experience 03 | 2013 MS Network Magazine
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Letters to the Editor
Letters to the Editor Dear Renee and everyone at the MS Society,
Well, what a busy few months Elizabeth and Charlie have had! Finally... after four qualifying events for the London Paralympics, Elizabeth and her lovely Ponderosa Stud Lucarno (Charlie), made it to be selected as the Reserve combination for London. Lots of training and dedication finally took them to the London pre-departure camp in Melbourne on the 5 August 2012. They were the fifth member on the Australian Team and their role was to fly to London on the 8 August if one of the four horses or riders did not pass final inspections. It was a tough week, however Elizabeth and Charlie were congratulated for their team spirit and as all horses vetted up ok – they travelled back to SA. The next three weeks were spent supporting our Aussie team from home and celebrating into the small hours of the morning when Jo Formosa won gold for Australia. It was an amazing experience at preparation for international travel
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MS Network Magazine 03 | 2013
and this experience was rewarded by an invitation for Elizabeth to ride for Australia in the November of 2012 in Hong Kong! Lizzie was thrill to be able to wear her London uniform and felt ever so proud to be an Australian.
This is an account in Lizzie’s words of her trip to Hong Kong: We have just returned from the CPEDI3 star International Dressage event (Para Equestrians) and what a fantastic time Mum and I had! The event involved six countries, including Hong Kong, Singapore, Chinese Taipei, Great Britain, South Africa and Australia. When we arrived on the evening of 20 November, after a wonderful flight with Qantas (thank you for the upgrade!), we were met at the airport by two lovely Hong Kong RDA volunteers, Shiean and Maria. The trip to Beas River Country Club in the New Territories took about an hour. I was feeling a little weary by this time... given I had a unscheduled Optic Neuritis attack four days out
of departure! The wonderful Dr Celia Chen and St Andrews Hospital got me back on deck and fit for travel. I wasn’t about to let this hiccup stop me! Thank heavens for steroid drug exemptions on my FEI card! On arrival in Beas River, where the Hong Kong Jockey Club had all the stables and loan horses, we were greeted by Miss Apple Wong from Hong Kong RDA and settled into our chalet. The other two riders on our team arrived on the 23rd, as the competition started on the 26th. It was good to have a few days to recuperate from travel and familiarise ourselves with the weather. The weather initially was quite balmy and pleasant, however, this soon came
Letters to the Editor
to an end and we had torrential rain storms and it was cold! We also had fantastic grooms from the jockey club! On the 24th, we tried out our loan horses, and under the direction of our Australian National Director, Julia Battams, I ended up with a nice retired race horse called “Keep on Easy”. These horses were not trained in dressage, however, responded to kindness and respect. The competition was over three days, with a test each day. Day one (Team test) ended well with a first place for us! I was thrilled to place first at my first competition abroad. Day two, Championship test and another win! Then we had the Freestyle test on day three and I couldn’t believe it when my
lovely horse gave all his heart to me and another win, giving us the Grade Three International Champion prize for Australia. Thank you Keep on Easy! It was a wonderful experience in Hong Kong and I was privileged to share this with our very own Gold Medalist, Joanne Formosa (London 2012). Jo is an inspirational mentor for me and I can’t thank her enough. Our team Director, Julia Battams worked very hard indeed and also became very wet in the rain storms – as we all did! Hong Kong RDA were brilliant hosts and Mum and I thank them. There was a great team spirit with all the countries, a pleasure to see and be a part of. My memories of Hong Kong will stay with me forever and I do hope Australia
are invited back in 2013. The colour system for rosettes are the same as the UK and Europe ...it was a bit funny having Red for first and blue second... it’s the other way around in Australia – but I soon got the hang of it! Continued overleaf
Images, clockwise from top left: Christening the top hat! Aussie team in Hong Kong with Chinese and Taipei team. Annie and Lizzie in Hong Kong. Lizzie, Charile and new jacket! Lizzie and Jo Formosa. Elizabeth and Championship first prize rosette. 03 | 2013 MS Network Magazine
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Letters to the Editor
Letters to the Editor continued
I had some wonderful sponsorship for this trip, as it was self-funded. As usual, Mum worked very hard fund raising. A big thank you to the generous sponsors in SA who believed in me. I still have MS, but there’s no way MS was going to have me... Hong Kong showed me this! Now, back in SA, Charlie and I are busy training for the World Games next year in Normandy. We have been given lots of positive feedback and it is our intention to be there! The next few months are busy, as we are competing both in able body dressage here in SA and some Para Equestrian also. We have our Adelaide Hills Dressage Club Champions this weekend, followed by our State Champs in April. We are also travelling down to Naracoorte on the April long weekend for the Mid South East Dressage Championships, where Charlie and I will compete in Open Medium and also Para Equestrian Grade three. Charlie and I also have just moved up a grade in Open dressage, to Advanced... where we get to wear top hat and tails! So far, we have reached well over qualifying 6
MS Network Magazine 03 | 2013
scores and I couldn’t be happier with him. My coach here in SA, Ruth Schneeberger is very pleased too. Love Elizabeth So, there you have it... straight from the horses mouth, so to speak! I am so proud of Elizabeth and her achievements to date. Amazing what one can do in the face of adversity! On the 16 March, we will be attending the Channel Nine Young Achievers Awards dinner, where for the second year running, Lizzie is a semi finalist. She is in the company of able body Olympians, so a true achievement... shame Charlie can’t come along too! This year I have my work cut out for me, as I attempt to secure a major sponsor for Elizabeth – a daunting task, however, one that needs to be done. So far, we have Kentucky Equine Research on board. They are supplying Charlie’s feed supplements to help keep his joints moving, to the tune of $3000. They have also kindly donated lovely rugs for him. Lizzie has not missed out there either – the incredibly talented Tailors of
Distinction and Mr Andrew Kemp have made the most beautiful dressage jacket... so very generous. Her first outing was in Hong Kong with the jacket, and I may add, it responded very well to the torrential rain showers! I do hope everyone is doing ok and we send our very best wishes to the MS community. It’s a tough disease to live with, however, as we have seen, there a lot of inspirational people in the community with MS and they strive for achievement each day. Thank you for all the fabulous work at the MS Society of SA and NT and we look forward to sharing more of Lizzie’s adventures with Charlie! Kind regards,
Annie, Stan and Lizzie Sobecki and Charlie too!
Above, left to right: Lizzie at the training clinic in Japan. Elizabeth and Keep on Easy at the Hong Kong Championships.
Letters to the Editor
News Flash James Bardsley, who has served as CEO of the MS Society and Multiple Solutions, has decided to move on from the MS Society after 8 years of dedicated service.
My husband is an artist and during the recent Renmark Rose Festival, we had our studio open to the public and asked that a gold coin be donated to MS as an entry to the studio.
James has been pivotal in the development of the Society in recent years, and more particularly so in the Employment services area. He has been a great contributor to the provision of services to people with MS, and his knowledge and experience in these areas will be missed.
Our daughter, Louise, is following her father’s footsteps and has also been drawing for the last few years and her work was also on display in our studio. Tony and Louise also displayed their work in the recent exhibition at the Royal South Australian Society of Arts in Adelaide. We were thrilled that Louise won an award of merit for her work. It is now ten years since Louise was diagnosed with MS and although she has her ups and downs, her positive attitude and her art help her to cope with the disability. You can see more of Lou’s work on her website www.arraticart.com
“Incomplete” by Louise Smith.
James has accepted a position with the Royal Society for the Blind, he has much to offer the RSB, and I am sure they will benefit greatly from his expertise and experience. We congratulate him on his new appointment and wish him the best with his future endeavours.
Margaret Smith
03 | 2013 MS Network Magazine
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CEO report
CEO report Comerford’s research is titled ‘Can chemokine decoy receptors inhibit white blood cell recruitment to the central nervous system in MS?’ This study focuses on trying to understand the role of white blood cells signalling in MS. We all understand the importance of research, and it would be very satisfying if more breakthroughs were to come out of Adelaide’s research facilities in the future.
“Seeking the cure. Providing the care.” has long been the mantra of the MS Society of SA and NT. The Kiss Goodbye to MS fundraising and awareness campaign, run by MS Research Australia (MSRA), reminds us of the need for long-term research projects. While we sometimes concentrate on short-term issues, we accept the need to raise the awareness of Multiple Sclerosis within the wider community, and to ask the community to assist in funding much needed research into the causes and possible cure of MS. The Kiss Goodbye to MS campaign does exactly that, and is involving a growing number of people from the broader community in the fight against MS. The beauty of this campaign is that everyone and anyone can be involved, and best of all it requires participants to have fun! Please check out how you might work with MSRA on this, and help spread the word a little further: www.kissgoodbyetoms.org I was excited to read recently that MSRA had made some more grant money available for MS research projects in South Australia. Dr Iain 8
MS Network Magazine 03 | 2013
You may remember my calls last year for more people to join our PwMS committee. I am pleased to say that 4 people answered the call; and the 4 new members have reinvigorated discussion around the meeting table. I would love to have another 6 members sharing their experience and knowledge with us, so if you have an interest, please contact Renee Meredith on (08) 7002 6500. You are already aware of the release last December by MS Australia of a Needs Analysis of people with MS within Australia, conducted by Deakin University in collaboration with MS Australia –Members of the PwMS Committee, MS Society Board Members and key staff met on Thursday 7 March to look closely at the report and its recommendations, so that we can better align the services we offer with your needs. We will develop an implementation plan over the next couple of weeks. This will become our guiding document over the next 2 or 3 years, with identified gaps in services being filled in line with our financial capacity to provide them. On 4 February the MS Society conducted a physiotherapy exercise class at Alwyndor Day Therapy Centre (DTC) at Hove. This was the first time that we had cooperated with a DTC to provide services to MS clients.
I hope that it is the forerunner of many new ventures with DTCs and other providers, so that many more PwMS have access to assessments, exercise classes and other treatments within a reasonable distance of home, even for those living in country centres. Details of the Hove classes can be found at www.ms.asn.au/physiotherapy.html I look forward to the day when such services will be available all over South Australia and the Northern Territory. I want to say a very big thank you to all PwMS, volunteers and staff who either swam or helped out at our annual MS Mighty Swim, which was held at the Unley Swimming Centre on 9–10 February. As always, it was a huge (24 hour) event which saw some 390 swimmers take to the water to raise money for the works of the Society. There were many amazing individual and team performances; one highlight for me was seeing the hydraulic lifter in use by many of our clients’. It was great to catch up with some of our loyal supporters at the swim – Mayor of Unley, Lachlan Clyne, TV personality Brenton Ragless and Peter Arbery from the Real Learning Experience, who kept me entertained while we cooked up the sausages. Well done to all involved it was a fantastic day!
Graeme Warnock Chief Executive Officer MS Society of SA & NT Inc
Page heading 1 | Page heading 2 | Page heading 3 News | etc
News
Murray 4 MS Community Fundraiser The Murray 4 MS Inc. journey began on 4 March 2013. Darren Rouse (event organiser) will be canoeing 2185km down the Murray with his wife Michelle to raise money for MS. Darren writes: “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. For over 30 years I have been an adventure canoeist, loving the outdoors and the River Murray. I decided to combine my love of adventure canoeing, with my desire to help sufferers of MS and their carers. By canoeing the 2185km down the Murray (from Albury Wodonga to Goolwa), I hope to raise money and awareness for this disease”.
If you would like to hold your own community fundraising event please contact Emily Polomka on (08) 7002 6500 or email epolomka@ms.asn.au To follow the Murray 4 MS progress on Facebook visit www.facebook.com/Murray4MS To make a donation visit www.everydayhero.com.au/ murray4ms To view Murray 4 MS videos visit www.youtube.com/user/murray4ms
Above, left to right: MS CEO Graeme Warnock and Murray 4 MS event organiser Darren Rouse. Darren and Michelle Rouse on board “Hobie Wan Kanobii” .
03 | 2013 MS Network Magazine
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News
News MS Choice Awards – Applications open!
Funds raised from our MS Events support the MS Choice Awards. MS Choice Awards will be given to people living with MS to help them follow a dream or make a positive difference to their lives, the choice is theirs. Don’t be shy to apply! Many people don’t feel they deserve to win, but these awards are aimed at YOU. Here are some examples of previous awards: n
Therafit machines
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Education costs
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Psychological services
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Personal trainers
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Travel costs to see medical specialists
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Holidays
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Mix and master a CD
An application form has been enclosed with this edition of Network however if you require any further information visit www.ms.asn.au or call Sonya on (08) 7002 6500 Applications close: Tuesday 30 April 2013. 10 MS Network Magazine 03 | 2013
Twenty Years: Twenty Stories Celebrating 20 years of the Disability Discrimination Act Twenty years ago, life for millions of Australians got easier. The then Deputy Prime Minister in the Keating government, Brian Howe, introduced an Act that would, for the first time at a national level, make it unlawful for people with disability to be discriminated against. The genesis of change was the Disability Discrimination Act 1992, which commenced operation on 1 March 1993. Twenty Years: Twenty Stories marks the Disability Discrimination Act’s twentieth birthday with twenty inspiring stories on film. You can view the films at www.humanrights.gov.au/ twentystories/index.html
Christmas Cracker lottery Our Christmas Cracker lottery winner Tony, pictured above with MS Society CEO Graeme. Well done Tony! Office relocation – Woodville and Elizabeth The Woodville office has moved, but only down the street! You can now find it at 51 Woodville Road, Woodville. The Elizabeth office has now relocated to 6–8 John Street, Salisbury. Exercise classes will not operate from the new site; however we are looking at alternative locations to hold these classes. If you want to stay up to date, subscribe to our e-newsletter on the MS Society website.
News
Buy your tickets in the:
RIZE P T FIRS 0,000 $10
P (08) 7002 6577 E lotteries@ms.asn.au order online: www.ms.asn.au
03 | 2013 MS Network Magazine
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News
News continued Can you lend a hand at our Mawson Lakes Head Office? Our Mawson Lakes head office is looking for a part time volunteer receptionist to join our vibrant team. As a receptionist volunteer you will respond to telephone queries from MS Society members and members of the public in a friendly and professional manner. You will be required to answer the phone, take messages where necessary and put calls through to MS Society staff. There are no set qualifications or experience required, however you will need to have excellent communication skills and most importantly you will need to be patient and understanding. You will undergo an induction process upon commencement, followed by ongoing support to help you fulfil the needs of this very important role.
For more information or an application pack, please email Kirsten on kalderson@ms.asn.au or call (08) 7002 6500.
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News
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Come and sing with us!
Singing improves well being, and assists with voice projection, breathing and posture No previous experience needed
Singing Groups for people with Parkinson’s and other neurological conditions affecting the voice Led by experienced choir leaders Inner Southern Area ‘Movers and Shakers’ Led by: Glenyce Durdin When: Wednesdays, 2.00pm - 3.30pm Followed by afternoon tea Where: Effective Living Centre, 26 King William Road, Wayville
Hills Area ‘Sing OUT!’
Led by: Jodie O’Regan and Ann Buchan -Neurophysiotherapist When: Fridays, 2.45pm - 4.00pm Including afternoon tea Where: Hills Community Seniors Centre, 4 Gibb Road, Aldgate Family members welcome! Cost $5 To book please contact Anastasia or Judy on 8357 8909
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03 | 2013 MS Network Magazine 13
Recipes
Recipes
Guacamole and Corn Chips I found this recipe on Stylish Kylie’s blog ‘Stylish Settings’. Kylie describes herself as “… a busy mum living in sunny Brisbane. I love home decorating – not the over the top posh designer look, just a loved and lived in look. I make things and attempt DIY to make our home a little nicer. Recently diagnosed with MS, I’m attempting to live a happy, healthy life. I share my healthy eating and lifestyle in the section The MS Foodie.” There are a lot of great recipes and home ideas on her blog, you can find them at www.frommydeck.com The following is one of the recipes published on her blog. “In Swank & Dugan’s book The Multiple Sclerosis Diet, there is a section in the recipe part called The Cocktail Hour, with recipes for dips and snacks to enjoy when you have your evening cocktail. Got to love it! There is a recipe for
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guacamole in the book, but this is the guacamole I’ve been making for the past few years, and I think it’s pretty tasty.” Ingredients n n
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1 ripe hass avocado Half a fresh green chilli, finely chopped 1 tablespoon spanish (red) onion, very finely chopped 1 tablespoon coriander (cilantro) leaves, chopped
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Juice of 1 lime
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Pinch of sea salt
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Black pepper
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Corn tortillas or other flat bread to make corn chips
Method 1. Put half of the onion, half of the chilli and a pinch of salt into a mortar and pestle and mash to a liquid paste. 2. Add the avocado – remove the skin, stone and roughly chop the flesh. 3. Add half the lime juice and roughly mash, make it as smooth or chunky as you like.
4. Add the remaining onion, chilli, and the coriander leaves and stir through. 5. Now taste the guacamole and add more lime juice until you are happy with the level of tanginess. Adjust any other seasonings to taste.
Corn Chips Now for the corn chips. Normally you would eat guacamole with totopos – deep fried corn tortilla chips, but I’m trying to eat healthy so I do mine in the oven. I haven’t found any corn or flour tortillas that don’t have the 282 (Calcium Propionate) preservative in them. The best I have found so far are corn mountain bread wraps. Method 1. Brush (or spray) the wraps with a little oil. I used avocado oil, you can use Extra Virgin Olive Oil if you have it. Then add some seasoning. I use salt flakes and a squeeze of lime juice. Cut the wraps into triangles and place on a baking tray. Cook in a 180C/350F oven for 3–4 minutes, until they are lightly browned and crunchy.
Recipes
2. These corn chips are very thin and crunchy. The chips will probably break if you try to scoop up the guacamole, so you may have to provide a teaspoon or spreader for your guests. If you can find fresh tortillas, they will be thicker. Enjoy this tasty guacamole and corn chips for your next ‘Cocktail Hour’.
Renee’s Avocado Chocolate Mousse I was looking for a healthier dessert to take to my brother’s house, something different to the usual box of Magnums, but quick and easy, so I thought I would try this avocado chocolate mousse. I was a little dubious at first … avocado in dessert? Mousse without cream? But I was pleasantly surprised with the result! Just a warning, it is very dense and rich, you only need small serves! Ingredients n
3 ripe avocados
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6 tablespoons cocoa powder
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1/4 cup honey
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1 tablespoon maple syrup (optional)
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1 teaspoon vanilla extract
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¼ cup of chopped almonds and pistachios
Do you have any feedback or recipes you would like to share, please email them to feedback@ms.asn.au or post to Network, PO Box 377, Salisbury South DC 5106
Strawberries to garnish
Method Puree avocados, cocoa powder, honey, maple syrup and vanilla in a food processor until smooth. Sprinkle with chopped nuts and strawberries before serving.
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2013 MS Mighty Swim
2013 MS Mighty Swim I would like to thank everyone who participated in the 2013 MS Mighty Swim – you are all MS Champions! We couldn’t have asked for better weather for the duration of the event and it was great to welcome back familiar faces and meet the newcomers eager to get involved in their first 24hr swim event! Among our supporters this year were Unley Mayor Lachlan Clyne, Channel 9’s Brenton Ragless and Swimming Olympian, Hayden Stoeckel! I’m still trying to decide on my event highlight but it would have to be between the late afternoon visits from Nemo the clownfish and the mankini’s that made an appearance in the midnight hours! A special mention must go to TEAM MS, who raised over $11,000 and a big congratulations to Claire Gordon (top female fundraiser) who raised $4,405 and Peter Bradley (top male fundraiser) who raised $3,766. Thank you for your outstanding efforts. Funds from the MS Mighty Swim support the MS Choice Awards.
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MS Choice Awards will be given to people living with MS to help them follow a dream or make a positive difference to their lives, the choice is theirs. I strongly encourage eligible participants to apply – turn to page 10 for more details. The MS Society is incredibly grateful for the support from the corporate community, together we are all making a difference to the lives of people living with MS. Thank you to The City of Unley, Norwood Swim School, Zoggs, Gerard McCabe, Core Physiotherapy & Pilates Studio, Primo Estate, Multiple Solutions and the Beemede Group. Of course we could never hold such a successful event without the amazing energy of our MS Crew – volunteers and staff that willingly give their precious time every year. We value each and every one of you immensely. Thank you so much! I can’t wait to see you all make an even bigger splash in 2014!
Em Polomka MS Society Event Coordinator
2013 MS Mighty Swim
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TEAM MS – A mighty bunch of awesome achievers
TEAM MS – A mighty bunch of awesome achievers The 2013 MS 24 hour Mighty Swim was again a fantastic event, the picturesque Unley pool was the perfect location and we were so lucky with almost ideal weather. I would like to highlight the achievements of our mighty TEAM MS swimmers and helpers and, at the risk of omitting someone, I would just like to thank and acknowledge everyone involved. A chronological account of the weekend events may be the best way to go. I arrived at the pool about 10.30am Saturday morning to find it looking fantastic and all the shades, chairs and tents already being set up – a great effort by the pool staff, fundraising team and lots of volunteers. Judy and Lyn already had the sausages sizzling and TEAM MS combined with the MS staff and friends team and the GOSH team from Bower place had set up camp at the shallow end of the pool. Lynn, one of our disability services clients who suffered a major stroke a number of years ago, set up her jewellery display. She had spent hundreds of hours making an exquisite range of jewellery to sell as a fundraiser for the Mighty Swim. This is an amazing achievement and very generous gesture for someone who has only one functioning hand. There is still the opportunity to purchase some of these items, email lo’connell@ms.asn.au for more information. The 12.15pm start time was a flurry of activity and we had Jess, Lesley and Debbie in the water for TEAM MS. All these swimmers put in a ‘Mighty’ effort 18 MS Network Magazine 03 | 2013
for the whole weekend – Jess swam almost non-stop to clock up 9.5km on Saturday afternoon, she really wanted to try and swim 30km for the weekend but unfortunately heat and exhaustion caught up her, nevertheless an awesome achievement, swimming for and with her mum Ruth, who also clocked up an amazing 2km.
Debbie and partner Neil were an awesome team with Debbie clocking up 4km for the weekend – an impressive improvement on her efforts from last year and she announced at the end of Sunday morning that despite being very tired she felt the best she had in months.
TEAM MS – A mighty bunch of awesome achievers
smorgasbord of fruit, dips, cheeses etc. A long 24 hours later Jan packed up her gear having been awake for the entire event helping out with lap counting, child minding and generally being continuously available for whatever we needed – a huge thank you for her efforts. Early Saturday afternoon, Genny, an MS Client, her husband Gerry, and their 11 year old son Luke arrived at the pool. Genny was determined to swim more than the 2 laps she struggled to complete last year. She is one of our past MS Choice award winners and more recently has been seeing a personal trainer. All this must have paid off as by 12.15 pm Sunday she had swum 10 laps and was not only proud of her achievements but especially proud of Luke as he had excelled, staying overnight in Jan’s tent and swimming 5km. He starting off being only able to kick with a board but by the end of the event he was able to swim freestyle on his own.
Leslie has been a keen participant in all 8 of the 24 hour swims and she once again excelled, swimming 10km over the weekend. This was especially impressive as she was unable to fit in any training for the whole year hence she figured this was the start of her training for next year. Her husband Rob was an amazing support – lap
counting almost continuously and then treating us all to some of his delicious home cooked goodies and amazing cheese platters – we were so spoilt! Not long after the start appeared the familiar figure of Jan, the MS Society social worker, complete with tent, chairs, sleeping gear and a
On both Saturday afternoon and Sunday morning the group of clients who have been regularly attending the MS lap swimming program with Elly at Payneham Pool – Fiona, Linda, Claire and Paul – were joined by Kelly and they motivated each other to exceed both their own and other’s expectations. Claire, with great support from her family and friends, was the highest fundraiser for the event, raising over $4000 and swimming 1.2km. All these swimmers exceeded what they did last year with Fiona swimming 300m, Linda 1.3km, Kelly 1km and Paul 1km. 03 | 2013 MS Network Magazine 19
TEAM MS – A mighty bunch of awesome achievers
Take the plunge Aquatic exercise can benefit people of all abilities and fitness levels.
do a 5 lap stint and then Andy, one of our carers, brought in his 12 year old brother Caleb who has cerebral palsy. They swam 14 laps, with Caleb able to swim almost unassisted this year. Catherine, another swimmer with cerebral palsy, improved on her efforts from last year with a 2.5km swim.
Also on Saturday afternoon Julie brought in her squad of kids from Child’s Play Physiotherapy and Novita who clocked up an hour of laps and one was heard to comment that it was good to do something for someone else. Graham and Glenis were also notable contributors to the numbers of laps swum. Josie came in to do some lap counting and then ended up doing a few laps after using the new lifter that was partly funded by the Mighty Swim. Jesse, who won an MS Choice award last year to produce a CD of his own songs, came down to the pool Saturday afternoon to promote his CD. The heartfelt sentiments expressed in his songs are truly inspirational and the CD can still be purchased from the MS Society for $10. Early Sunday morning saw Louise, one of our MS Choice award winners from 2012, with help from husband Jonathon, 20 MS Network Magazine 03 | 2013
The most heart-warming story of the event was our oldest participant Fred who at 82 suffers from post polio, has virtually no use of his legs, has had prostate cancer, heart problems and a brain bleed but despite all this he was determined to swim to support his daughter Sam who has MS. He swam an incredible non-stop 1.5km and raised over $1,000, his persistence and determination is to be highly commended. We could not have survived the event without our dedicated team of supporters, from MS social worker Jan who lap counted for almost the entire 24 hours, to Erica, Gemma, Kayelene, Rob and Rita who amongst other jobs also counted laps. Special mention to the MS staff, family and friends team so ably coordinated by Tracey, Sandy and Jeff – they did an amazing job of swimming, fundraising and supporting our Team MS participants. Congratulations also to the MS Society fundraising team and the Unley pool for hosting such a successful event.
Lee O’Connell Captain of Team MS
Exercise is not only good for overall health and wellbeing; it can also help people recover effectively from injury and ailments. Having a suitable environment in which to exercise can make a real difference to people living with MS, which is why aquatic exercise (exercising in water) is often recommended. Water provides an optimal environment for exercise, especially for those who face challenges with land based exercise. “Many activities people may find difficult, painful, or even impossible to carry out on land are more likely to be possible in water,” says Tracy Martinuz, MS Australia – ACT/NSW/VIC exercise therapist. “This applies to all people but is especially true for people with injuries or disabilities.” Many people with MS, with various levels of ability, enjoy participating in this form of exercise. “The good thing is, being a strong swimmer is not a pre-requisite to participation,” adds Tracy. “In fact, simply learning to move, walk or float in water, even with assistance, can be of benefit.” Water holds special properties, making exercise seem easier and more achievable in water than on land. These properties, outlined below, are considered when designing an aquatic exercise program to suit the needs of most people with MS. n
Buoyancy The water environment suits many people because water reduces the effects of gravity. When standing
Take the plunge
on land, gravity pulls your body towards the ground, while water helps push the body up, making you feel lighter and making it easier for you to move your arms and legs. This is known as buoyancy. It helps reduce the force and impact on your joints, can relieve aches and pains, and can help with balance. n
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Hydrostatic pressure The deeper you are in water, the more pressure the surrounding water exerts on your body. This can help reduce swelling in the arms and legs, which can be a problem for people who spend a large part of their day in a wheelchair. Turbulence This refers to the irregular motion or swirling movement of water. By varying turbulence, the level of challenge can be increased or decreased. For example, performing faster or large movements in water increases intensity, whereas using floatation aid (eg a pool noodle) helps decrease it. Turbulence can be useful for practicing exercises designed to improve your balance, as it is easier to ‘catch yourself’ from falling in water than it is on land. Resistance Water is denser than air and provides greater resistance to movement. Moving your arms and legs against resistance is similar to lifting weights. For example, exercise can be made more challenging by holding paddles or other water devices to increase the level of resistance. This can help to strengthen muscles and can be easily modified to suit people with various levels of ability in terms of fitness and mobility.
Benefits of aquatic exercise Aquatic exercise may: n
Improve strength and flexibility
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Improve fitness and energy levels
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Reduce pain
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Reduce swelling in the arms or legs
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Increase self-esteem, allow you to feel more relaxed, and provide socialisation and fun.
The warmth of the water can also make exercising easier for people who experience symptoms of muscle tightness or weakness.
Guidelines for joining an aquatic exercise program 1. Get medical clearance to ensure it is safe for you to exercise in a pool. Inform your physiotherapist or water instructor about medical and physical conditions that could be affected by the heat or pressure of the water. 2. Ensure accessibility is not an issue at the pool you would like to attend. Some pools even have hoists to help you in and out of the water. A physiotherapist can assess your current fitness and level of ability, and refer you to a suitable aquatic exercise program. 3. Choose a pool heated to between 25 and 35 degrees Celsius. Cooler pools are best for those who are heat sensitive or for fairly intense exercise. A warm pool is good for low intensity or passive exercise (eg walking and assisted movements) and spasticity (muscle stiffness), which worsens in cooler water.
4. Limit your time in the water to 20 to 30 minutes, initially, to avoid becoming fatigued or overheated, especially in indoor pools. A rise in core body temperature can cause symptoms to appear or old symptoms to worsen temporarily. This usually resolves within 24 hours. Let your instructor know if symptom changes persist. 03 | 2013 MS Network Magazine 21
Take the plunge
Take the plunge continued The MS Society run a water-based exercise group at the Child’s Play Pool: 274 North East Rd, Klemzig on Wednesdays and Fridays 9.00 – 10.00am.
Paul Colquist a client and a volunteer at the MS Society, he has enjoyed aquatic therapy classes at the Child’s Play pool in Klemzig for the past 2 years.
Note: New clients need a screening assessment prior to starting.
When did you start aquatic therapy? I started aquatic therapy over two years ago after hearing about it when I was volunteering at the MS Society. After I heard there were benefits to people with MS, I thought it might be a good thing to try.
Please call (08) 8360 0800 for more information. This article first appeared in the Spring 2012 edition of Intouch magazine – the official magazine of MS Australia – ACT/NSW/VIC. To access the full edition of Intouch, visit www.msaustralia.org.au/actnswvic
What is involved in aquatic therapy? We start with different exercises in the pool; these usually focus on strength, balance and core strength and often followed by games to keep our reflexes alert. One example is volleyball taps, where we have to keep the volleyball in the air for as long as possible. Six months ago I started lessons to teach me how to swim properly. My aim was to compete in this year’s MS Mighty Swim, which I did! How have things changed for you since you started aquatic therapy? I really notice when I miss an aquatic therapy class, the strength in my legs and arms deteriorates. What do you enjoy about aquatic therapy? All of the teachers and other group members are so much fun. The teachers are really supportive and they often change and evolve the program if they hear of new ways to do things – it keeps it really interesting. We are a tight group and there are certainly social benefits as well as physical benefits. I look forward to Fridays every week because I can have a laugh. Aquatic therapy makes me feel normal. The weightless feeling in the pool is the only time I feel normal. I get a bit sluggish on the days I do it, but the benefits far outweigh a little tiredness. Would you recommend aquatic therapy to others with MS? Certainly, 150%. I know every case of MS is different, but this has been my saviour.
22 MS Network Magazine 03 | 2013
Our people
Our people What’s your favourite food? Seafood.
other’s expectations and find a freedom of movement that is impossible on land.
When you’re not working at the Society, what do you do? Spend time with my family, watch my children play sports and enjoy going to the Barossa or McLaren Vale doing wine tasting while nibbling on a platter of local produce.
For instance I find it so rewarding to be part of enabling a client who comes into the pool and is very apprehensive about even getting their feet off the bottom to gain the skills and confidence to be able to swim independently and so participate in an event like the MS 24 hour Mighty Swim. Describe yourself in 3 words. Compassionate, energetic, enthusiastic. What’s your favourite food? Vietnamese chicken salad.
Bianca Priasca Staff
When you’re not working at the Society, what do you do? I am married with 3 adult boys, the youngest is about to move to Bendigo to study, the middle one is recently married so I am practising being a mother-in-law, and the oldest is in fulltime mission work in Tasmania – so the empty nest syndrome is about to be a new phenomena!
Job Title: Site Administration Officer But what do you do? I am your first point of contact for the Modbury office, I answer client enquiries both over the phone or in person, assist staff with all kinds of administrative tasks and make sure the office is running smoothly. How long have you worked at the MS Society? It will be 5 years in April and still loving it. What is the most enjoyable part of your job? Being able to find an answer to all our clients questions and assisting them in general as I am a people person. I also enjoy working with an amazing group of staff which makes it a pleasure to come to work. Describe yourself in 3 words. Gregarious, efficient, helpful.
Lee O’Connell Staff
But what do you do? I spend a lot of my time in the aquatic therapy pool with MS, disability services and post polio clients.
I have swimming training 4 times per week and regularly participate in Masters Swimming events both in the sea and pool. I was privileged to attend the World Masters Swimming Championships in Italy last year and came away with a few world top ten medals which was a bit of a bonus.
How long have you worked at the MS Society? 11 years.
I am a regular bike rider and have ridden in the Bupa Challenge Tour for the last 4 years.
What is the most enjoyable part of your job? The pool is a great therapeutic environment where clients regularly achieve over and above both their’s and
Outside of work, home and sport I am involved in our local church and am in the process of completing a Spiritual Directors Formation Course – another of my passions in life.
Job Title: Physiotherapist
03 | 2013 MS Network Magazine 23
Our people
Our people continued Neil Overton Volunteer What do you do at the Society? Usually I just let the volunteer coordinator provide me with a list of tasks that need doing, this can be anything from opening the morning mail, stuffing envelopes with lottery tickets, doing some database work on the computer or doing some typing and proofreading as required. It’s a varied set of tasks and they keep me occupied and interested at the same time. How long have volunteered at the MS Society? I finished working last August after 31 years in the IT industry, since then I have performed various volunteer tasks for the MS Society, including assisting with the Bernie Lewis MS Mud Run and the Mighty Swim.
NEW SEASON NOW OPEN
Why did you become a volunteer? Two reasons really; firstly my monthly medication expenses were quite high and no longer having a pay cheque was causing a strain on our finances. The Government, through Centre-link were offering a Health Card for people who undertook volunteer work in the community which would allow for discount chemist scripts. Secondly was the sudden solitude I found myself experiencing once I left the work force. Volunteering gave me an opportunity to continue to interact with other people and meet new ones. Describe yourself in 3 words. Eccentric, Methodical, Equitable. What’s your favourite food? Beef Stroganoff. When you’re not volunteering, what do you do? Watch a lot of Sci-Fi, grow bromeliads, collect pocket watches, housework and cooking. I also spend some time working on my 1979 Jaguar XJS V12 Coupe, a 4-year (so far) restoration project.
THE Therry dramatic society proudly present
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24 MS Network Magazine 03 | 2013
For tickets & information contact Sonya from the MS Society (08) 7002 6503 or srowell@ms.asn.au
Page heading 1 | Page heading 2 | Page heading Why I volunteer 3 | etc
Why I volunteer Neil Overton After having been employed in the IT Industry for 31 years, I was used to being surrounded by and working with a large variety of people, all with their own individual quirks and personalities. Then life took a sudden twist when I was forced into retirement at age 52 due to ongoing issues relating to Multiple Sclerosis. I experienced a massive culture shock as my contact with other people was dramatically cut to just a few close friends and family. Staying home all day just watching movies starts to sap away your energy and your feeling of usefulness. Depression sets in and you find your health begins to succumb to whatever ails it. While volunteering for a few hours each week at the MS Society may seem insignificant to most observers, for me it has become a lifeline to the rest of the world. Those few hours a week are my time to interact on a social level and connect with people once more – something of which I found myself much deprived, since exiting the workforce. The MS Society is staffed by an amazing team of dedicated workers with a singular drive and passion to devote their efforts to raising awareness of MS. The society offers guidance and much needed assistance to people suffering from MS as well as ongoing fundraising campaigns which support the expensive services and projects which are provided to those afflicted with MS. Being able to offer my time and skills to this all important organisation
is more than just a benefit to the MS Society. The rewards my work provides me on a personal level are just as significant. Just recently I volunteered to provide support during this year’s MS Society Mighty Swim on the registration desk. Like most sufferers of MS, I have a major problem with exposure to heat and as the night shift was short on volunteers, this seemed like a perfect match.
It’s been 6 months since I joined the crew at Mawson Lakes, and I look forward to the next 6 months with great enthusiasm. I hope my time there will be most rewarding as I make new friends with not only the amazing staff, but the rest of the volunteer team as well.
I had signed on for a 6-hour shift from 8pm to 2am however as the night flowed on, I found that I was enjoying my time chatting with the competitors and some of the MS staffers and so decided to stay until the 6am shift arrived. The weather was perfect and while some found the 15C temp a bit chilly, I was in my element with a t-shirt and a cold drink. It was certainly an experience worth undertaking to watch so many of our most giving South Australians come out and swim laps throughout the night. Everyone appeared to be really enjoying themselves. The MS Morning crew cranked up the barbie and got everyone warm inside with a ‘healthy’ breakfast. 03 | 2013 MS Network Magazine 25
Relationships and disclosing MS
Relationships and disclosing MS Rosalind Kalb, PhD, National MS Society, New York, USA Making connections with others, forming new relationships and eventually finding a life partner, are all high on the priority list of young adults.
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There is no need to share personal information (about MS or anything else) unless one chooses to do so.
Relationships are often the most rewarding and satisfying aspect of our lives, yet they can be challenging to develop, nourish and sustain.
But like all young adults, people with MS do have successful relationships, find life partners and enjoy family life.
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New Relationships n
How people feel about themselves and their MS will determine, in large part, how they present themselves to others.
Remembering that people “are more than their MS,” and that MS is only a small part of who they are, will make it easier for people they are dating to know and enjoy the other parts of them as well. 26 MS Network Magazine 03 | 2013
Once it feels as though the relationship is worth pursuing, it is time for both people to begin sharing important health and personal information about themselves.
Everyone has something they worry about telling a prospective partner; when one person shares, it encourages the other person to do so as well. n
The following strategies can help people navigate some of the challenges along the way – particularly those related to disclosing their diagnosis to people they are meeting or with whom they are in a new relationship, and to communicate more effectively about MS-related issues in their ongoing relationships.
managing them – is essential for both members of the couple. n
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Women and men living with MS often worry that MS will add to these challenges – making it difficult for them to meet people and find partners who value them in spite of their MS, and are willing to share the complexities of an unpredictable, chronic illness.
The first date is a time for two people to decide whether they want to see each other again.
Healthy relationships are usually built on honesty, good communication and trust. Secrets and half truths do not make a strong foundation for success. While some people will be reluctant to persue a relationship with someone who has MS, other people will not. When disclosing the diagnosis, it is important to give the other person time and space to think about it and respond. They are likely to have questions and concerns that need to be shared and discussed.
Ongoing relationships n
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When one person in a relationship has MS, both people are living with it and each has to grieve over the changes and losses it can bring, and learn to manage the challenges. Understanding MS – the symptoms it can cause and strategies for
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Everyone handles challenges differently. It is important to recognise and respect each other’s ways of coping. Open communication is one important key to success. No matter how much two people love each other, they cannot read each other’s minds. Healthy communication leads to shared problem-solving, which cuts down on competition over who is more stressed or overwhelmed, and leads to effective solutions for both members of the couple.
In conclusion, there are many strategies that can help young people with MS form and maintain loving relationships, whether they are single, in a short-term or long-term relationship. Much of this relies on good, honest communication between all the parties involved. For young people with MS it is also about identifying when they are ready to discuss their MS and how much they want to share.
How do I know when it’s the right time to tell someone I am dating that I have MS? No time is right for everyone. It may help to ask yourself when you would like to know important information about the other person. If you are invested enough in the relationship to want to know about his or her health or other issues, that may be the perfect time to share your diagnosis.
Relationships and disclosing MS
How do I know whether I’m talking too much about my MS to others or too little? Remembering that MS is only a part of who you are may help to answer that question. Someone who cares about you will certainly want to know about your MS and how you are feeling, but will quickly get bored if that is the only subject of conversation. On the other hand, withholding important information about how you are feeling or challenges you are facing puts other people in the position of having to guess, which is likely to leave you both feeling pretty frustrated. A good strategy is to ask yourself if you spend as much time talking about the other person and issues or shared interest, as you do talking about your MS.
Why would anyone want to get involved with a person who has a chronic, unpredictable illness like MS? Because getting diagnosed with MS is never something a person chooses, it is hard to imagine another person making the choice to take on its challenges. But remember that you have a lot more to offer someone than your MS. When people fall in love, they share interests, beliefs, sexual attraction, joys, sorrows and challenges, with MS just being one part of the package.
What are the best ways to go about meeting people when you have an illness or disability? Again, no single answer is right for everyone and the answer is likely to depend on how and where you feel most comfortable. You may look for opportunities to meet people who
share your interests and passions, such as classes and clubs. Or you may feel more comfortable in groups where others have MS and may identify more closely with your issues and challenges. In recent years, many young people have opted to get to know others through online dating sites or social networking sites. These online venues offer people the opportunity to share information about themselves in whatever way feels most comfortable, and to select the responses that seem like the best fit for them. Many people with MS have found life partners in this way. The social networking sites of MS organisations and societies also offer opportunities to make friendships and find peer support. Thank you to the Multiple Sclerosis International Federation for allowing us to reproduce this article, which first appeared in MS in focus ‘Young People with MS’ 2013. You can access previous copies of the in focus magazine from www.msif.org
03 | 2013 MS Network Magazine 27
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! Peer Support Groups meet in the following areas: Location
Day/Time
Venue
Group Coordinator
Barossa
3rd Thursday each month
Tanunda/Nuriootpa
Denise Hoffman (08) 8565 6245
Berri
2nd Sunday each month
Berri Hospital/various venues
Cheryl Johns (08) 8529 7003
Eastern Suburbs & Foothills
3rd Thursday each month
Burnside Community Centre
Paula Hardy (08) 8379 8220
Fleurieu
Random Tuesdays
Rotated around Fleurieu eateries
Jill Masters (08) 8555 0358
Gawler
2nd Monday each month
Gawler Neighborhood House
Carolyn Cordon 0418 806 490
Glandore
1st Wednesday each month
Glandore Community Centre
TBC – Contact MS Society
Hard Yakkas (Elizabeth)
2nd & 4th Wednesday each month
Salisbury MS Society Office
Tallia Coulter 0403 766 157
Modbury
Last Tuesday each month
Independent Living Centre, Gilles Plains
Jennifer Cotis 0407 888 492
Morphettville
4th Friday each month
Silks Bistro, Morphettville
Christine Sutherland (08) 8276 3779
Noarlunga
3rd Thursday each month
GP Super Clinic, Noarlunga
Virginia Stanfield (08) 8382 5244
Port Lincoln
Every 2nd Tuesday
Group member’s homes
Jasmine Blackwood 0417 374 251
Stirling
3rd Wednesday each month
Stirling Coventry Library
TBC – Contact MS Society
Tailem Bend
Wednesdays, mid-monthly
Group member’s homes
Sue Griffiths (08) 8572 3914
Unley
Times to be advised
Group member’s homes
Fiona Slee (08) 8373 6358
Family members and carers are welcome If there have been any changes to your support group that we’re not aware of, please contact the MS Society to advise us of any updates. 28 MS Network Magazine 03 | 2013
Peer support update
News Flash … News Flash … News Flash … We are looking to set up a number of “Parenting with MS” peer support groups around Adelaide to connect parents with young children to each other for support, practical advice and a “break” from your daily routine. We will provide toys and an environment that enables your child to play safely and for you to relax just a little (because as all parents know, there is no such thing as really relaxing when small children are around...)! If you are interested in attending a group like this, please call Michelle Anderson at Head Office on (08) 7002 6500 or email manderson@ms.asn.au with your name, suburb and preferred days/times.
Online support 121 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. 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.
Western Suburbs Group to start up soon We now have a number of people interested in starting a peer support group in the western suburbs of Adelaide. If you are interested in joining this group please call Michelle Anderson at Head Office on (08) 7002 6500 or email at manderson@ms.asn.au with your name, suburb and preferred days/times.
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. 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.
You can find it at www.facebook.com/ groups/MySocietySANT/ – just request to be a member.
03 | 2013 MS Network Magazine 29
Workplace Solutions
Workplace Solutions
Mary-Anne Edge Workplace Support Coordinator Mary-Anne has immense knowledge and understanding of the impact of disability, the needs of business, and how to support employee and employer so that a diverse workforce is a successful one. Her forte is finding solutions ‘outside of the square’ and then making them happen.
30 MS Network Magazine 03 | 2013
Graham O’Neil Workplace Support Consultant
Melissa O’Brien Workplace Support Consultant
Graham’s employment history has been varied since becoming a paraplegic over twenty years ago due to a motor vehicle accident. He enjoys helping people and his life experiences of living, working and raising a family while being confined to a wheelchair has taught him valuable skills which he uses to support and inspire other people with a disability.
Melissa has completed a Bachelor of Behavioural Science and demonstrated her passion for supporting people to achieve their employment goals during her 7 years of employment with Multiple Solutions. She is dedicated to reducing the impact of disability by identifying solutions which meet the individual’s needs and those of their employer.
Workplace Solutions
We are pleased to advise that our employment support programs have secured ongoing funding from the Department of Education, Employment and Workplace Relations (DEEWR) to March 2018. What was known as the ‘Job in Jeopardy Program’ continues to provide support to workers and has changed its name to ‘Workplace Solutions’, so that all workers with disability or illness, their employers or the self-employed, feel comfortable seeking support.
Michele Watts Workplace Support Consultant
Checklist for when you may need workplace support
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Michele has been working within the Community Services Sector for 20 years and has extensive experience in case management. She has a passion for working with people and in particular providing support to individuals who have high and complex needs. She believes it is important to use a person centred approached while providing support.
Employed or self-employed for at least 8 hours per week. n
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Experiencing fatigue and/or heat intolerance.
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You want information about disclosure, discrimination, industrial legislation or education for employers and co-workers.
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You feel stressed/anxious about your ability to continue working. You cannot maintain productivity levels or meet KPIs. You cannot meet the physical demands of your current role. You are needing support with personal care for meals and/or bathroom needs at the workplace, or help to just get around.
Any one of these is a valid reason to ask for workplace support.
There are concerns about your mobility, balance or workplace safety.
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Please feel free to contact the Northern team on (08) 8203 6600 or the Southern team on (08) 8198 1400 or email to wpsolutions@ms.asn.au if you would like to discuss workplace support.
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You need equipment or modifications to make working easier.
Early intervention can address concerns before they become major issues. Don't wait until your health and job are at risk – contact us today.
Did you know? n
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Multiple Solutions can purchase cooling vests, cooling collars or devices to keep you cool while you work? Mobility aids can be funded if they are needed at your workplace? You can get a Mobility Allowance from Centrelink, and a Health Care Card, if you are in paid or voluntary work, or study, and have difficulty using public transport?
Call Multiple Solutions on (08) 8203 6600 to find out more.
03 | 2013 MS Network Magazine 31
Client stories
Client stories ‘Crying For’ and revamped this years later when I was looking for another song to record to show people my work. I had probably written about 6 or 7 songs when my uncle introduced me to Andy, who recorded my first CD. Andy is a GP who lives in Port Augusta and he is also in a band. After our introduction things just grew from there. I recorded the piano for my CD at his house in Port Augusta and I recorded the vocals at home with his recording equipment when he was in Adelaide.
Jesse Frick Music has always been a really important part of my life; I learnt to play the piano, guitar and sing from a young age and later studied at the Elder Conservatorium of Music at Adelaide University. Relapsing progressive MS means I can no longer play the piano and guitar – but I still have my voice. I learnt to play the piano first, before teaching myself guitar. I wrote my first song when I was about 10. It was a love song, because a 10-year-old knows a lot about love right? The chorus went something like “Oh I love you, oh I love you, oh yes I do and I said back to her, I love you too” – I don’t like to give myself the title of lyrical genius as a 10 -year-old, but with material like that, it can’t be argued with! I stopped writing until I grew into a teenager. When I was about 17, I wrote something similar to the song on my CD called
32 MS Network Magazine 03 | 2013
The cello and bass part on the CD were played by my friends who also attended the Conservatorium and I used a drum machine for the drums. All the sound effects for the drum machine were actually recorded at Abbey Road Studios, so technically I can say my CD was part recorded at Abbey Road Studios! After receiving a grant from the MS Choice awards, I was able to get the CD professionally edited and mastered.
‘I wrote my first song when I was about 10. It was a love song, because a 10-year-old knows a lot about love right?’ My CD is called ‘27’. This is just a special number for me, I think it’s the meaning of life! It always appears in my life, it’s everywhere for me. Some of the songs on my CD are about my experiences with MS. ‘Song for Brian’ is about my brain. I was in a period of remission and I wanted to write a song to my brain saying, ‘I’ve won and you haven’t’ but it didn’t sound right to say brain, so an anagram for brain is Brian. ‘The Point’ is about injecting medication, this song is completely sarcastic, I talk about how much fun I’m having! ‘The One About Fun’ is from another period of remission. It was about one night out
Client stories
when I went out to the Uni O’ball and out to town later, no walking stick, it was just a really fun night. ‘Crying For’ is a really sad song, the lyrics are pretty self explanatory. I didn’t want people to think I was overly depressed, which is why I added the lyric ‘it’s not that I want to die, I just want to cry’, so people know it might be a sad song, but I’m not an overly sad or depressed person. I decided to donate the proceeds from the CD back to the MS Society as I wanted to give something back as they have helped me so much over the years.
My recent experience with stem cell treatment Because I have relapsing progressive MS and with the way it’s going, there aren’t many other treatments out there for me my neurologist suggested having stem cell treatment. I thought ‘well we’ve tried everything else; we’ll give this one a go.’
My neurologist initially sent me to Western Australia to get a second opinion on the treatment. The neurologist there, who was an expert in the stem cell treatment, agreed that I should have it done. It was intense. I started the treatment in July with a round of chemotherapy,
‘I was lucky enough to dodge some of the really bad side effects from the chemo.’ I think this was a milder chemo to prepare my body. I then had my stem cells extracted and frozen so they could be put back after the chemo treatment. The stronger chemo then began and it eventually wiped out my immune system completely. I was lucky enough to dodge some of the really bad side effects from the chemo. I had the typical side effects of hair loss and nausea and although this was still horrible, it wasn’t as intense as I thought it would be. I had the chemo over a period of about a month and this was one of the worst parts for me as I was isolated in a room for this whole time.
03 | 2013 MS Network Magazine 33
Client stories
Client stories continued
I remember after about 3 weeks of being stuck in this room, I went out into the hall to do some physio exercises and I felt really naughty, like I shouldn’t be out there! I think I nearly turned agoraphobic as I wasn’t calm again until I was back in my room. Thankfully I quickly got over that!
‘I remember after about 3 weeks of being stuck in this room, I went out into the hall to do some physio exercises and I felt really naughty, like I shouldn’t be out there!’
Once my immune system was at zero, they were able to put the stem cells back in and I started rehabilitation for a couple of weeks to make sure I was okay to come home. This was not great socially; I was by far the youngest patient there by 50 years!
I was finally allowed back home after this, but continued rehab for 10 weeks at Hampstead, again surrounded by people at least 50 years older than me! Not that age stopped them; there were a few of the older ladies who tried to hit on me!
I was allowed visitors, but I had to make sure they weren’t sick and were germ free. To keep the environment as sterile as possible my food had to be specially prepared and water boiled before it was given to me.
34 MS Network Magazine 03 | 2013
It was around October about 4 months after the treatment began, but I had set myself a goal when the treatment began, I wanted to be well enough to go to see Radiohead (my favourite band) in Melbourne in November. I can happily say I made it there, and even have the signed set list hanging in my room thanks to an amazing friend. The biggest difference since having the treatment has been my energy levels. I used to take tablets to give me energy, but I don’t take them anymore and I have more energy to go out. My concentration and memory has also improved. My most recent MRI showed no new lesions, which is fantastic. Stem cell treatment was very worthwhile for me, it was something I had to do.
Client stories
‘My wife noticed I was starting to drag my left foot/ leg a little and the physician got me to do a heel-toe walk which I failed. The physician suggested I see a neurologist.’
Kevin Zeuner Looking back, the first symptoms of something not quite right manifested in 1991 when I was around the age of 40. I played social tennis at that stage and I began ‘losing’ the ball in flight.
I was also having trouble with my feet and someone recommended seeing a podiatrist. I went to him for 2 years, but of course nothing changed. Eventually I had to give up playing tennis because of this. I’d been a keen sportsman all my life; I was playing A grade tennis in the men’s division at 15, plus football. I’d won trophies for tennis, football, snooker and golf. Golf was the next casualty; I had the same problem, I couldn’t see the ball.
Meanwhile I was seeing a physician due to my blood disorder, polycythaemia, which was diagnosed in November 1994. He was taking a pint of blood from me every week for three months in order to thin it out. My wife noticed I was starting to drag my left foot/leg a little and the physician got me to do a heel-toe walk which I failed. The physician suggested I see a neurologist. By May 1995 I was diagnosed with Multiple Sclerosis and MRI scans confirmed this. My walking continued to deteriorate, my balance was severely disrupted, and I began using a walking stick for support. Gradual deterioration continued and due to my reduced hours of work and inability to do a lot of jobs around the house, I began to become a bit of a couch potato, concentrating more on what I couldn’t do rather than on what I could do.
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Client stories
Client stories continued ‘… deterioration continued and due to my reduced hours of work and inability to do a lot of jobs around the house, I began to become a bit of a couch potato, concentrating more on what I couldn’t do rather than on what I could do.’ At least I was still able to earn an income, albeit a lot smaller one than before. If it hadn’t been for that income I would have felt entirely useless. My sport had of course gone entirely by this time. I made several trips to hospital due to complications of either my polycythaemia, or after falls that temporarily rendered me unable to walk. I eventually had to forgo the walking stick and use a wheeled walker for safety and stability. This also caused safety issues for me at work and I had to relocate to a different building. It all appeared to be a bit of a downward spiral. I had been working at the Salisbury warehouse for Woolworths since August 1988 staying in this position until 1995. When I found out I had MS I cut back to 20 hours a week. At that time, Woolworths opened a new warehouse and offices at Gepps Cross.
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Rob (Multiple Solutions Support Worker), Kevin and Marira.
At about the same time, extensions to the warehouse were started and I was moved to the regional office again for safety reasons. Here I had a different role and I started doing data entry for completed truck washes and checking the weighbridge for any overweight trucks that went out the gate.
‘Marira, my supervisor in the new building, could see that it wasn’t a healthy environment for me to be working in and that I was unhappy. She took control of the situation and discussed a range of scenarios with me, one option was moving upstairs.’
I was originally placed in an office downstairs, then as a temporary move when the office was rearranged, I was assigned to a desk in post room.
The post room was not an ideal workspace for me, and too far from my managers who were still in the warehouse. I found I didn’t have
When we transferred there I was moved to the administration building for safety reasons. The forklifts and getting through the runabouts to the warehouse with my walker posed too much of a safety risk. My first task in the office was to check that the pallet invoices and dockets were accurate and charged correctly. Subsequently the pallet suppliers changed the way we were charged and the position became defunct.
Client stories
‘Along with moving me to new space, Marira also helped to adapt the role to suit my needs. She could see I wasn’t being utilised and she arranged for me to help with follow up calls to stores about safety concerns they have …’ enough work to keep me busy and I was starting to feel unhappy at work. Marira, my supervisor in the new building, could see that it wasn’t a healthy environment for me to be working in and that I was unhappy. She took control of the situation and discussed a range of scenarios with me, one option was moving upstairs. I had concerns about this, as the lift was unreliable and if there was a fire in the building, there was no way for me to get downstairs without using the lift. Marira placed a call with Multiple Solutions to help work through the problems and ensure the transition process went smoothly. Multiple Solutions was able to help with modifications to my workspace, along with the installation of a chair lift, and they suggested an evacuation chair be ordered for use in the case of a fire.
Woolworths were more than happy to purchase the chair as they felt it could be used for other staff members and they will be conducting training for at least 3 staff members on how to use the chair. Before the move upstairs, Marira showed my wife Penny and I the new workspace to make sure I would be comfortable with the change.
I’d been thinking about it for a while. Lo and behold, I could do it, my wheeled walker was accepted as an aid, and I’ve been playing lawn bowls at every opportunity since. Now I work five hours per day, four days a week, with income boosted by a disability support pension, and play bowls every Saturday and Wednesday (my day off). Penny now says I’m hardly ever home, and certainly not sitting on that couch watching the ogle box when not at work. I believe if it wasn’t for my work, my ability to contribute to the household income, and my lawn bowls as my sport/hobby, I wouldn’t have the positive mindset and fitness I have now.
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.
Along with moving me to new space, Marira also helped to adapt the role to suit my needs. She could see I wasn’t being utilised and she arranged for me to help with follow up calls to stores about safety concerns they have, a job that needed more attention before I took it on. Since these changes at work, I feel much happier in myself. One day, just a couple of years ago, I got up off the lounge and told my wife I was going to the local lawn bowls club to see if I was able to bowl.
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Fundraising
Fundraising
World MS Day World MS Day is Wednesday 29 May. Conducted by the Multiple Sclerosis International Federation (MSIF), this is a day when people from around the world can join together to raise awareness about multiple sclerosis. The theme for this year is young people and MS, to highlight the fact that most people are diagnosed with MS in their thirties. One initiative that is part of this year’s focus is to ask people, “What’s your motto?” To get involved you can: n
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create your own and post it on the World MS Day website on World MS Day, joining people from around the world share your motto on Twitter, using the hash tag #mymotto (don’t forget to tag the @MS_SA_NT so we can retweet) make your motto your Facebook status and link to the World MS Day website post your motto on our Facebook page and we will repost on our wall www.facebook.com/ MSSocietyofSANT
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Kiss Goodbye to MS 2013 The Kiss Goodbye to MS Fundraising campaign is held throughout the month of May, culminating on World MS Day on 29 May. This national initiative is to support MS research in Australia. There are a number of ways you can be involved in the campaign, you can: n
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hold a fundraiser, some ideas are listed across the page purchase merchandise from the Kiss Goodbye to MS website www.kissgoodbyetoms.org.au volunteer to help out or coordinate a BBQ at your local Bunnings store (see below for more details) follow the campaign on Facebook and Twitter:
www.facebook.com/ KissgoodbyetoMS www.twitter.com/ KissgoodbyetoMS
Want to hold a fundraiser but don’t know what to do? Here are some ideas! Everybody has a hobby or an area of interest, and we find this is a great place to start – if you enjoy doing what your planned event will involve, then the more you will put into the process, the more successful your event will be and the more money you will raise to help Kiss Goodbye to MS! Theatre: Organise a theatre or cinema trip (or a screening of a ‘kiss’ themed film), or host a production or a talent quest in your community and theme it with our fabulous Kiss Goodbye to MS posters, balloons, stickers and merchandise.
Food: Organise a Kiss Goodbye to MS breakfast, lunch or dinner, have a cake stall at the local market, host a wine tasting event or a coffee morning with the neighbours … the list is endless!
Fundraising Spotlight
Sports days: Golfing days and
Work or school related events:
tennis tournaments are very popular. Get a celebrity involved and see the interest grow. Organise a special match with a local side at football, cricket or bowls and have a barbie and raffle at the end of the game. You could even encourage the competitors to wear red lipstick, Kiss Goodbye to MS t-shirts or lipstickers!
School kids love mufti days, so liaise with schools and ask kids for a gold coin donation to wear red, instead of their uniforms, all for a good cause.
Parties: There are so many to choose from: Why not ‘Kiss and Makeup’ – get a group of your friends around for a night of pampering with foot spas and bright red manicures, face packs, and red themed foods (champagne and strawberries are a good start!). Other ideas are jewellery, pyjama, dance or fancy dress parties. Let your imagination run wild!
Garage sales: All of us have something cluttering up a cupboard, wardrobe or shed and need the space. So why not ‘kiss goodbye’ to your unwanted items and Kiss Goodbye to MS at the same time!
Have your workmates slick on their red lippy, red clothes or lipstickers and make a donation to Kiss Goodbye to MS, or have an office swear box and kiss goodbye to bad words around the workplace! For more details visit the Kiss Goodbye to MS website www.kissgoodbyetoms.org
From Mackay in QLD clockwise around the nation back to Smithfield QLD (M to S), funds raised will go towards research for a cure and for services for those with MS. We hope to raise over $50,000 by having M to S Sausage Sizzles in as many of the 234 Bunnings stores as possible! Bunnings are willing to have as many sausage sizzles as we can provide volunteers for, which is fantastic! But we need your help!!!!
How can you help?
Thank you for your support. Together we will Kiss Goodbye to MS!
Volunteers Needed for Bunnings M to S Sausage Sizzle We are excited to announce that from 1–19 May, Kiss Goodbye to MS are partnering with Bunnings to run sausage sizzles all around Australia!
Is there a Bunnings near you? Why not get your support group, your friends and family together to run an M to S Sausage Sizzle? We are looking for volunteers willing to lead a small group in running a sausage sizzle, and volunteers willing to be part of a team. Contact Zoe Chapman on 02 8484 1319 or email her kgtms@msaustralia.org.au for more information or to volunteer! 03 | 2013 MS Network Magazine 39
03 | 2013 MS Network Magazine
Pamela – Call Centre Operator.
Locations Head Office/Mawson Lakes
Christies Beach
Modbury
Endeavour House Technology Park Module 6E 11–15 Fourth Avenue Mawson Lakes SA 5095 PO Box 377 Salisbury South DC SA 5106
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
P (08) 7002 6500 F (08) 7002 6599
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
Brighton 7A Sturt Road Brighton SA 5048 PO Box 275 Brighton SA 5048 P (08) 8198 1400 F (08) 8377 0711
P (08) 8948 5300 F (08) 8948 5344
P (08) 8256 3700 F (08) 8256 3749
Woodville Greenacres 19B Fosters Road Greenacres SA 5086 P (08) 8360 0800 F (08) 8360 0899
www.facebook.com/MSSocietyofSANT www.twitter.com/MS_SA_NT
www.ms.asn.au | The magazine of the Multiple Sclerosis Society of SA & NT
51 Woodville Road Woodville SA 5011 PO Box 16 Woodville SA 5011 P (08) 8345 8700 F (08) 8268 4224