05 | 2014 MS Network Magazine
Network
News 5 Access Fitness
7
Farewell Sandy Andrews
9
MS Mighty Swim
10
MS Bookshop
14
Sorento Care
15
ChiBall 17 Peer Support
18
Information Seminars
20
Multiple Solutions
22
Client Stories
24
Locations 28
Sclerosis Society 05 | of 2014 Magazine 1 The magazine of the Multiple SAMS & Network NT | www.ms.asn.au
In this Issue
In this issue Contents From the Editor
3
CEO Report
4
News 5 Access Fitness
7
Farewell Sandy Andrews
9
MS Mighty Swim
10
MS Bookshop
14
Sorento Care
15
ChiBall 17 Peer Support
18
Information Seminars 2014
20
Multiple Solutions
22
Workplace Support
23
Client Stories
24
Locations 28 MS Head Office PO Box 377 Salisbury South DC SA 5106 P (08) 7002 6500 MS Assist 1800 812 311 F (08) 7002 6599 E ms@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 admission. 2
MS Network Magazine 05 | 2014
Letter from the Editor
From the Editor
Letters
I had the opportunity to attend a Gawler Peer Support meeting in February. Group Coordinator, Helen Hoppmann organised Tony Piccolo to come and speak to the group and answer any questions they had on parking, access to shops and state concessions available to them. At the meeting Tony suggested Nick Champions would be the best person to speak to about any federal issues, and sure enough, Helen has now arranged for Nick to come and speak to her group later in the year. Well done to Helen for arranging this and showing that persistence pays off! Hi everyone, It has been a long hot summer, I’m sure many of you are relieved that autumn well and truly here and you can get some relief from the heat. Don’t forget there are products that can help you stay cool like cooling vests, hats and collars. Our friends at Personal Cooling Products (see ad on page 14) and Arctic Heat both offer discounts to people with MS. I recently paid a visit to the Access Fitness in Payneham. This gym has been set up with accessible facilities and equipment and employs exercise physiologists to conduct assessments and set up programs for their patrons. You can read more about the gym on page 7 or I suggest you head down there and check it out yourself if you live in the area.
You will see a letter from the Naracoorte Auxiliary in the column to the right. I hope many of you who live near Naracoorte were able to make it to their morning coffee fundraiser on Thursday 15th May. The Auxiliary has done some amazing things in the community over the years and, having been to one of the morning teas myself, I can highly recommend all the delicious homemade goodies they have for sale on their trading table!
Dear Renee, Yesterday our Naracoorte MS Auxiliary held our AGM & reported on a very successful year of fundraising approximately $7,000 – wonderful support from the community. You may also be Interested to know that we re-elected Mrs Monica Carter as President for the 46th time!! Monica formed this auxiliary in 1968, & has been our enthusiastic leader ever since – a truly amazing effort!! Details of Morning Coffee Naracoorte Fundraiser: Date: Thursday 15th May 2014 Where: Settlers Cafe, Gordon Street, Naracoorte Time: 10am Cost: $12 Well stocked trading table, usual basket of raffles $1.00 per ticket. Yours Sincerely Barbara Johnson, Secretary. Naracoorte MS Auxiliary
Don’t forget it is World MS Day on Wednesday May 28th. This is a great opportunity to raise awareness about MS. I encourage everyone to wear red or do something special on May 28th to help educate the community about MS. Renee Meredith Editor Network MS Society of SA & NT Inc feedback@ms.asn.au
Monica Carter - re-elected President of the Naracoorte Auxiliary for the 46th Year
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CEO Report
CEO Report some services are suffering some disruption, but we are very aware of the importance of them and will put appropriate arrangements in place as soon as possible. I apologise for the current interruptions.
Since I last wrote we have put a considerable amount of time into our new Strategic Plan, which I had hoped would have been finished in time to include in this edition, but we didn’t quite make it. We will include full details in the next edition. The strategic planning exercise has had input from a vast range of stakeholders, including, most importantly, a significant number of people with MS. The contribution of this group has been outstanding, and the final plan will reflect to a very large extent the needs as identified by them, which by and large also reflect the finding of the Deakin University/MS Research Australia “A Needs Analysis of Australians living with Multiple Sclerosis” published in November 2012. One of the key elements to emerge has been the desire for access to a range of allied health services for ALL people with MS, whether they live in Adelaide metropolitan area, Darwin, Alice Springs or regional and rural areas in between. Access to services was identified as more important than WHO delivered them. Much research is being undertaken into how best to meet this request. In the meantime, 4
The Society has been financially stretched in recent months, like many other charitable organisations in Australia. I have been told by government officials of a number who have not survived, and this is a travesty. The Board and I have been working with government ministers and heads of government departments to identify ways that we may be able to help each other achieve our goals in these difficult times. More on this as discussions progress. I am always amazed by the number of people who involve themselves in our annual Mighty Swim at Unley Swimming Centre. Four hundred swimmers, plus many volunteers and staff of the Society and of the pool pulling together to put on such a magnificent community and fundraising event is a sight to see. Over $90,000 was raised, which was also a remarkable achievement. My thanks to ALL who were involved in this very successful event. Our Manager of MS Assist, Michelle Anderson, and I have participated in a number of sessions in recent months about the NDIS. We have received feedback from MSL in Victoria and New South Wales about their experience in the trial sites in those states, as well as direct consultations with NDS and NDIS officials. It seems those receiving packages under the NDIS are very pleased with them. However, not everyone with MS is being assessed as eligible for packages, and we are, with the other state societies and MS Australia to
MS Network Magazine 05 | 2014
ensure that the system is meeting the needs. I spoke briefly last month about a new event – the MS World Velo Enduro 24 – a 24 hour team relay cycling event in Victoria Park. Despite us having first claim on the proposed date for that event, we have apparently been gazumped by a free event which will draw a lot of attention and participation from our Velo 24. We had no option but to defer it to a date yet to be set; this date will be set in conjunction with cycling clubs and societies. And so here we are again in the month of May, and leading up to World MS day on 28th May. That also happens to be the date of our MS Choice Awards to be held at the Unley Town Hall, where we will make awards to help some dreams come true for people with MS. It is always an exciting night, and showcases the Society at its best. It is also a fantastic awareness vehicle for the Society. I hope that the winter weather brings relief to many, and pain to none. Kind regards,
Graeme Warnock Chief Executive Officer MS Society of SA & NT
News
News Badge Day
Well done Jordy!
Badge Day has been a successful event for over 20 years and in 2014 we want to make it even bigger.
Do you remember Jordy McCullum kissing Goodbye to MS last year?
We are desperately looking for volunteers to help raise awareness and collect donations for people living with MS. There are various locations available in Adelaide’s surrounding suburbs and regional areas. Bill and Ruth (pictured below) are regular collectors for the MS Society and over the years have raised an incredible amount of money. You don’t have to volunteer the whole day, any time you give will be much appreciated.
Jordy recently received a Governor of South Australia Commendation award at the SACE merit ceremony. She received this award for showing excellence in SACE academic achievements as well as excellence in SACE capabilities. Jordy’s award was for the citizenship capability through her research project of raising awareness and funds for MS. Jordy completed a research project on whether one person can make a difference in the fight against MS as her dad is living with MS.
To get involved simply email Sonya on srowell@ms.asn.au or call 7002 6500. Every dollar raised helps the MS Society to support people living with MS and their families in South Australia and Northern Territory.
She Loves Me Tuesday 10th June Adult: $30 Concession:$25
The Summer of the 17th Doll
The Darling Buds of May
Wednesday 27th August
Wednesday 12th November
Adult: $25 Concession: $20
Adult:: $25 Concession: $20
The Therry Dramatic Society and the Multiple Sclerosis Society have once again come together to offer 4 new exciting productions held at the Arts Theatre throughout 2014. This year’s line up includes She Loves Me, The Summer of the 17th Doll and The Darling Buds of May. For booking information please contact Sonya on srowell@ms.asn.au or call (08) 7002 6500.
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News
News Continued Do you have an injury or health condition?
Western Suburbs Exercise Group
Are you keen to become more active or improve your health?
The Physiotherapy and Exercise Physiology department is looking for expressions of interest from clients who would like to participate in an exercise group in the Western Suburbs.
If you are ready to move on from more specialised care with an allied health professional, but are not ready or suitable for the mainstream fitness industry: TAFE SA Regency Campus Exercise Clinic may be able to help!
Our environment can significantly influence our health and well-being. It can pose a risk, inhibit or support our ability to function and remain safe. This month HS for MS is focused upon promoting a safe home. It is built upon the principles of adapting the environment to match everyone’s individual needs. A safe home has the benefits of: •
Facilitating universal access – not only for people with MS but their family, friends and guests
•
Enhance abilities
•
Maximise efficiency
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Reduce falls and injuries
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Reduce fatigue by decreasing our energy expenditure
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Cater for any planned/unplanned events such ageing or having children
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Optimise health and well-being
The clinic is fully supervised by an accredited Exercise Physiologist, with one to one exercise delivered by fully qualified personal trainers undertaking further diploma level studies in working with clients with medical conditions or injuries. Following recommendations and/ or exercise prescriptions from your allied health professional, you will be given a personalised exercise program designed in conjunction with the accredited Exercise Physiologist. There will be ongoing consultation with the allied health professional if required. Thursdays, for 1 hour between 1-6pm at cost to you of $30 *Please Note: We would like all participants to be available for a minimum of 6 x 1hour sessions, with no obligation to continue, however if you would like to continue the $30 will give you membership for 1 semester. Places are limited!!! For further information please contact MS Assist on 1800 812 311 or email msassist@ms.asn.au
For further information contact us on hsforms@yahoo.com.au or call the MS ASSIST line on 1800 812 311
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MS Network Magazine 05 | 2014
The venue is likely to be at Seaside Wellness (ECH community services) 168a Cudmore Tce Henley Beach (next door to Western Hospital). Days and times are yet to be confirmed. If you are interested or want more information please contact MS Assist on 1800 812 311 or email msassist@ ms.asn.au
Volunteer Wanted! We are looking for a volunteer to help with our Motorised Exercise Pedal (MEP) home hire program in the northern suburbs. This role involves the pickup and delivery of sets of motorised exercise pedals from our Enfield office to our clients in the community. A car and current driver’s licence is essential. Petrol reimbursement is available. If you are interested or want more information please contact MS Assist on 1800 812 311 or email msassist@ ms.asn.au
Online Seminar Service Did you miss the recent talk by Hans-Peter Hartung MD? The MS Society has developed an Online Seminar Service. As they become available, videos of presentations for the MS Society of SA & NT can be viewed by clients via our website. The password you will need to access this service is ‘MSinfo2014’. Visit www.ms.asn.au/media to access the videos.
Access Fitness
Accessible Fitness for All In September 2010, Liz Doudle first experienced the symptoms of Cerebral Demyelination. Liz experienced significant weakness in her right side and had great difficulty in completing the most simple tasks that she had previously taken for granted, such as cutting her food at dinner, styling her hair and doing up her shoelaces. Liz found that she needed to perform most tasks with her left hand and made changes such as buying shoes that didn’t have laces. However for Liz, the effects of her condition were not limited to just functional loss. Liz felt isolated. Her friendships had changed and she was homebound. Two years ago, Liz was referred to Access Fitness. As the name suggests, Access Fitness is all about making fitness accessible to everyone, regardless of their level of function. Access Fitness is Adelaide’s first gym with custom designed wheelchair and disability accessible equipment, combined with a physiotherapy treatment facility. Access Fitness provides people with a facility which is welcoming, inclusive, safe, specialised and focussed on improving function.
At Access Fitness, Liz was taken under the wing of Adam Lidiard who she affectionately calls the ‘Smiling Assassin’. She knows when Adam is walking over with a big smile he is about to change an exercise. Adam, one of the three Exercise Physiologists at Access Fitness, has given Liz a program with a focus on balance and strength. Due to the muscle atrophy, Liz found that she was able to get down to the floor but was unable to get back up. Through the program, Liz has been able to strengthen her legs and regain muscle. The MOTOmed Movement Trainer which can be used either in a passive, motor assisted capacity or alternatively in an active capacity, using a person’s own muscle strength, was an excellent tool in rebuilding lost strength and muscle mass. Although for Liz, a former tennis player, the Wii is her favourite piece of equipment. Liz attends Access Fitness 3 times a week. For Liz, attending Access Fitness has enabled her to improve her strength and balance, but as importantly for her, Access Fitness has provided a sense of community.
provided a safe and supportive environment to help improve levels of physical function, prevent physical deconditioning and assist in the prevention of secondary complications. Equally important, Access Fitness is a place where people can improve wellbeing through participation in exercise and a supportive social environment. If you are interested in learning more about Access Fitness or visiting the facilities in Payneham, please do not hesitate to call 1300 368 141 or visit the website www.accessfitness.com.au
Access Fitness is specifically designed to provide accessible fitness for all. Everybody is welcomed and
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News Gawler Peer Support Group Helen Hoppman and the Gawler Peer Support Group arranged for Tony Piccolo MP to attend their support meeting in February. Tony answered questions about issues people with MS were facing in the local Gawler area. Well done to Helen Hoppman for arranging the meeting and big thanks to Tony for attending.
The Gawler Peer Support Group meeting with Tony Piccolo MP
Goodbye Sandy!
MS Assist Telephone Information Service MS Assist can help you with Information such as: •
Transport options in your area
•
Centrelink processes & forms
•
Local Council & State Government services in your area
•
MS Society services
•
Continence support services
•
Research updates
•
List of Neurologists in SA
•
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 times and our operators will return their call on the next business day.
Email queries may also be directed to msassist@ms.asn.au 8
Sandy Andrews has been a vital part of our Physiotherapy and Exercise Physiology Team for many years so it was with great sadness that she finished with us at the MS Society. Many people may not realise that Sandy has had involvement with the MS Society for over 20 years. As a qualified yoga instructor, Sandy taught a MS Yoga class from 1994 – 2012 at our Klemzig building and then the Enfield Community Centre. During this time she also volunteered at the MS Society. In 2004 Sandy started working casually to support our aquatic therapy program. This role grew and in 2007 Sandy took on a permanent part time position. Her role as Therapy Assistant has covered many areas – leading aquatic therapy groups and exercise classes; assisting clients with individual pool programs, whole body vibration therapy and motorised exercise pedal programs; and supporting the physio team in many administration tasks. Sandy’s additional skills in yoga and meditation have also been extremely beneficial. Her expertise in yoga for people with disabilities has meant we could run training days for yoga teachers (focusing on MS and other disabilities) as well as meditation sessions for clients and also staff.
MS Network Magazine 05 | 2014
Sandy has always shown great compassion for our clients and been a strong advocate for their needs. Her gentle nature, thoughtfulness, holistic life approach and words of wisdom will be missed by clients and staff alike. In leaving us, Sandy will be able to spend more time on her yoga teaching business as well us setting up a Spirituality Centre at St Marks Anglican Church in Golden Grove. This will involve carrying out Spiritual Direction, running Quiet Days, leading meditation groups and running Taize worship. She will also be able to holiday with her husband who is nearing retirement. Thank you Sandy for everything you have contributed and all the best for your future endeavours! Margot Strelan Senior Physiotherapist
Farewell Sandy Andrews
Farewell Sandy Andrews Dear MS Society Clients As many of you know, I left the MS Society on Friday February 28th 2014 after 9.5 years as a Physiotherapy Assistant. I have had an association with the MS Society for over 20 years. I emigrated here from UK in 1991 where I was teaching yoga, and in 1993 I was doing a course on foot reflexology and met James Flaxman who was providing massage for clients at the MS Society. He mentioned their yoga teacher was leaving and maybe I could take over the position. I applied and got the position. I had taught yoga to people with MS in UK so I knew a little about it and I also belonged to the Yoga for Health Foundation in UK which started because of an interest in yoga for MS in Scotland. Yoga for Health used to run retreats for people with disabilities and had good outcomes with the work they were doing. Once I had started the MS yoga group, I realised I would need more training, so I did the Yoga for Health Australia Remedial Yoga training graduating in 1995, and became a Remedial Yoga Teacher in 2002. I did my 1:1 study for part of the course with Lorraine, one of our MS clients. The MS yoga class went from strength to strength, especially when Irma joined. She found the yoga so helpful she told everyone they should attend! Luckily I had a wonderful helper, Dawn Wallace, who used to come every week. Usually her dog came along with her, she was a bit smelly (the dog I mean not Dawn!) and cried when Dawn relaxed as she thought something was wrong!! Dawn helped with the hands-on work. We did chair yoga and yoga on the mat too, and we had some plinths which meant people who could not get up and down off the floor could use them.
After yoga we used to have lunch together at Klemzig and always celebrated birthdays with cake! Wonderful friendships developed over the years, and it was a real joy for me to be part of it. Thank you to all those people who used to come. Some clients were still attending the class when I stopped running it in 2011. I was needed by the MS Society on Tuesday mornings for Aquatic Therapy. Yoga teacher Russell George took over the class for a while, and then unfortunately had cancer and died in 2012. The MS yoga class folded at the end of 2012. It was very disappointing as I had kept it going for so long! In 2004 Lee O’Connell approached me and asked if I would like to help in the pool and use my foot reflexology skills. I thought it sounded like fun so I said yes. I was in the pool at Klemzig 4 times a week helping with the MS groups, then the Disability Services Group when it started and later the Polis SA group at RSB. In 2007 I took on her permanent part time hours and started working with motorised exercise pedals, whole body vibration and running exercise groups and learning the joys of excel spreadsheets, outlook, invoices and the new data base. It was great – I learned so much and the physiotherapy team were lovely and very supportive, especially Margot and Lee. But the best bit was working with you, the clients! Travelling with you on your journey, sharing the ups and downs, and helping you keep active! You were all such a blessing to me and sometimes I wonder if it was you giving me the therapy instead of the other way round! You are all so inspiring as you cope with MS, find what helps and get on with life.
As one of our clients once said, “I have MS, but MS hasn’t got me!” It’s wonderful how you all support each other too, and I have really enjoyed working with you all in all the different capacities. I will miss your lovely smiley faces and all the laughs we have had along the way. I am going to focus more on my yoga business – “Sandy’s Yoga for Health” – I am still running 3 community classes at Para Hills and Wynn Vale. I am also still leading the weekly Christian Meditation Group and monthly Taize style worship and I will be doing more Spiritual Direction and leading Quiet Days and Retreats at Golden Grove. I won’t be bored! Also, my husband Jeff retires on March 17th and we are planning to travel and enjoy ourselves! Goodbye and good luck to you all and thank you for all the kind wishes cards and presents! You are all amazing! Don’t forget to keep active and practise your yoga stretching, breathing and relaxation! Love Sandy
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MS Mighty Swim
MS Mighty Swim ay y February 8th and Sund im was held on Saturda Sw ty gh Mi d MS an s 14 es 20 cc e Th great su nges, the event was a alle ch me so ite sp De . February 9th with MS in SA & NT. 0,000 for people living $9 er ov se rai to d lpe he 42 degrees! turday was a scorching Sa – er ath we the s wa Our first challenge hard to keep the water imming Centre worked Sw ley Un at, he the at To comb ld refreshments, our Bull arrived with icy co d Re at s nd frie r ou , fully temperature down und the pool and thank and sunscreen runs aro ter wa r ula reg did en rs illed wh the voluntee idents. Everyone was thr inc d ate rel at he y an ut . we escaped witho me much needed relief ernight and provided so ov gh ou thr me t ca ou ge ab cool chan ay morning, when after around 6:30am on Sund ing There was more drama pool because of lightn re forced to evacuate the we we ng mi d im an sw in of ped back 19 hours and our swimmers jum , lay de ort sh a ly on s strikes! Luckily it wa made up for lost time. MS Mighty swimmers at this year’s w ne d an es fac r ilia fam It was wonderful to see ity and camaraderie. erful sense of commun nd wo a h wit t en ev an and we had Swim; it really is s to our tired swimmers, ge ssa ma ed ed ne ch mu Core Physio provided ing and invigorating morning and run a relax ay nd Su on us it vis irit es and nails Jo from Yoga Sp re kept busy painting fac we rs tee lun vo r rne Co yoga session. Our Kid’s tertained. and keeping the kids en imming and in outstanding efforts in sw d ce du pro rs me im Sw swum at 91.2km, All our Mighty t the title for most laps ou k too ol ho Sc im Sw fundraising. Norwood ir first year at the MS cond with 90kms in the se in ng mi co b Clu im h $9645, with Onkas Sw s the Atlantis Frogs wit wa m tea g isin dra fun st Mighty Swim. Our highe and Leslie Chisholm fundraiser with $3625 le ma st he hig r ou s wa Peter Bradley stic efforts! iser with $2000. Fanta dra fun ale fem st he hig was d the City ley Swimming Centre an Un ers ort pp su e im g-t Thank you to our lon ! Thanks also to our preciates your support ap im Sw ty gh Mi MS e d Bull, Yoga of Unley. Th well as Core Physio, Re as d, en ek we the er ov wonderful volunteers ces at no cost. their products and servi ing vid pro for w dre An Spirit and DJ ar, it’s never too early to mers in the pool next ye im Sw ty gh Mi r ou all e Hope to se start training!
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MS Network Magazine 05 | 2014
MS Mighty Swim
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MS Mighty Swim
TEAM MS Wrap up 2014
sive helpers. A huge thank you and mas group of swimmers, supporters and hty mig a t wha MS: m. M Swi TEA hty YOU Mig THANK ts at the 2014 MS r amazing efforts and achievemen congratulations to everyone for you so far have raised over $8,300! proud. We swam almost 120km and nt eve the did MS, M TEA , row a For the 9th year in MS. Some of the highlights from TEAM a swimming event, weather was pretty favourable for the rall ove , 40°C ng rchi sco a Although Saturday afternoon was Sunday. a calm and balmy 28°C at 5am on better in the pool than out and still er - raising $2,000 - a great effort m, was the highest female fundrais Swi hty Mig MS 9th her in 6km g the pool as they needed to stay Leslie, swimmin my nibbles) had to delay coming to yum very of r plie (sup Rob d ban as she and hus ir bushfire. and protect their home from the Bela arrived at the pool early from their home, which meant they ted cua eva e wer ily fam Hay the , the pool at different Similarly bushfire affected ge for us! The whole family were in anta adv at gre a – MS M TEA for with Jess the first swimmer 800m and Arthur 200m. tanding 12km, Ruth 4km, Rachael times with Jess swimming an outs an outstanding total of 1km and is Saturday and Sunday clocking up both on m swa y Kell nts clie MS One of our ing effort Kelly. s keep her sane - a truly outstand help that ine lifel the is g min swim adamant that . MS Physiotherapy e cerebral palsy, swam on Saturday hav who b, Cale and a Ann ita, Nov unceremoniously throwing Some young clients of an both Anna and Caleb’s swims by beg he and , ther bro r olde b’s only learnt to swim assistant Andy, is Cale onal entry method, Anna, who has enti onv unc this by all at sed pha rminedly swimming 600m them in the pool. Not elf and all her sponsors by very dete hers d rise surp ths, mon few last slept very well in the car independently in the heard she was unusually quiet and We se. cau MS the for 0 $80 ost h year he has become and proudly raising alm mmer for the last few years, and eac Swi hty Mig ular reg a n bee has b on her way home. Cale virtually unassisted. b swam 2.1 km over the two days, more independent. This year Cale e ladies have Fiona swam on Saturday. Both thes nt Clie MS and a Lind nt clie apy Their Our Disability Services Aquatic ther Payneham Pool through Elly Fleig. program the MS Society offers at g min a bit of swim lap with a, the of Fion ge and anta oke adv taken g 30 laps of backstr min swim tly den pen inde and udly training paid off with Linda very pro nce, swam a proud 1km. encouragement but very little assista in the Saturday afternoon heat. ghter Isabelle were happy to swim dau old r yea 5 her and got Mar MS Physiotherapist admirable 1.7km. board and noodle to complete an Margot assisted Isabelle with kick k before. He duly compete in the swim only the wee to ge llen cha the n give was k Mic to do more next year. New to MS aquatic therapy, pleased with his efforts and vowed very was he ted, aus exh h oug obliged and 8 laps later, alth a few hours sleep while others, like 24 hours of the swim. Some caught re enti the for ed stay ants icip part TEAM MS and the Mighty Ducks by A number of s full 24 hour shift, supporting both ples slee a ! d age man , Jan ker, wor dip herself when it all got too hot! our MS social ouraging and even having a quiet enc , ding min d chil , food ng plyi sup lap counting, Jan you are a legend. g a graveyard shift at tion, swimming a mighty 6km includin dura the for e ther was na, Don er, First time Mighty Swimm and encouraging others. 4am and was constantly supporting . part of our aquatic therapy program k came with his son Charlie who is Mar ber mem rd boa s viou pre and s. MS client rs – great effort guy m on and off for the entire 24 hou They camped out overnight and swa m. Luke stayed overnight time supporters of the Mighty Swi long are e Luk son and y Jerr d ban an impressive 20 laps, and MS client, Genny, hus without a kickboard. Genny swam style free swim to ned lear he as and her family and and managed 3km t go to Mighty Ducks captain Annalise mus ks than y Man her. for first big a totally unassisted – and encouragement. M MS a mighty amount of support friends who gave Luke and all of TEA
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MS Mighty Swim
Previous MS physio assistant Erica brought her daughter Annika and nieces Jennifer and Monique and they managed 410 laps between them – what a team! They stayed overnig ht and were always willing, at any hour, to jump in and swim laps for the cause – they were part of the reason TEAM MS had someone swimming in our lane for the whole 24 hours. Debbie and Neil joined the happy campers – Debbie was a bit disapp ointed that she only swam 3km – however I think she should be very proud with Neil also adding 900m to our lap total. Many thanks to them and all our other ‘graveyard shift’ swimmers – Jonathan (2.5 km) and Jack (3km) did the midnight to 2am shift and Jonathan was back at 6.30am to help his wife, MS client Louise, swim 700m. A great effort and improvement on last year’s distance. Ann and Elly covered the 2-5am shift with Ann very happy to improve on last year’s distance, swimming 1.5 km. MS Client, Chris Onishko, a keen participant and very successful fundrai ser in our past MS Mighty Swims – unfortunately couldn’t swim this year due to an ongoing shoulder injury. However, she came out to support her Mum, Rita, (2km) and sister Helen (4.2km) who swam to uphold the MS cause for her. We recruited 2 new mighty swimmers and lap counters, Jill McPherson and former Paralympic swimming champion Lyn Lillecrapp, a polio sufferer. Jill swam a very impressive 8 km includin g a 2-3am shift and raised $1200 and Lyn powered up and down the pool most of Saturday afternoon – I hope she kept a record of laps swum as we all lost count. It was truly special to have Jill and another polio sufferer, Jo, come and support the MS Mighty Swim, as for most of the history of the event, 80 + year old polio sufferer, Fred Wilshaw, has been an amazing supporter and fundraiser for TEAM MS. Fred swam for his daughter, Sam, who is one of our MS clients. Very sadly Fred passed away last year and the decision was made to dedicate an hour of this year’s swim to his memory. From 7-8pm on Saturday Fred’s daughter Sam, and his granddaughters, Kiah and Vanessa, and fellow polio sufferer Jo came out to swim, and all the Mighty Swim teams swam for that hour in memory of Fred. Jo swam for 1 ½ hours and Sam and the girls managed 6 exhausting laps with Sam heard to comment that how her Dad clocked up all those kms with “no legs” still amazed her. A well deserved mention to MS clients who very bravely but maybe unwisely took up the challenge of helping to fill some of the gaps in the TEAM MS roster. Graham swam 3 sessions (including an 11pm to midnight stint) and 5.1 km later had exceeded his and everyone else’s expectations, raised almost $700 and did a radio interview about his involvement in the Mighty Swim on 5RPH – what a mammoth and highly commendable effort. Bianca, who also works for the MS Society, not only organised a whole gang of kids to swim in the youth team but she also swam a mighty 1 km for TEAM MS in the late evening shift, did lots of lap counting and was then on the rego desk right through the early hours of Sunday – she, like Annalise and Jan, had virtually no sleep for the whole 24 hours. In summary – a fantastic effort by everyone involved and a brilliant result to support such a worthy cause as the MS Choice Awards and the MS Society. For me, it was truly a privilege to be involved with such an inspirational group of people.
Lee O’Connell - TEAM MS Captain
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MS Bookshop
MS Bookshop ‘Hurry up and Meditate - Your starter kit for inner peace and better health’ by David Michie Meditate? Lotus position on top of a mountain chanting “Om”. I don’t think so. I don’t have time in my busy life with competing demands of retirement/ family/recreation to sit around for an hour chanting and gazing at my navel. I don’t sit still for 5 minutes without jumping up to do something. The title of this book had a strong appeal and it didn’t take too many pages for me to be convinced that meditation is my best chance to improve performance, reduce stress, increase efficiency and be happier. Drawing on both scientific studies and a thousand or so years of Eastern Buddhism this book paints a convincing picture of the overall benefits of regular meditation. If you’re the type swayed by the science then you are presented with numerous studies that demonstrate the effects of meditation on the
neuroplasticity of the brain, making us more efficient thinkers - saving us time - increasing happiness and making us more aware of other peoples’ moods and emotions. As a sceptic I found that I have changed my thinking. But do I need to have an hour a day to meditate? No - regular short sessions are fine. Try downloading the app ‘Smiling Minds’ for guided sessions with an Australian voice. I have also found the ‘Conscious’ app very good for daily suggestions of mindfulness. The internet is full of information about ‘mindfulness’ - you could waste hours working out if you understand it, or just go with the flow - try this app and it won’t take long for you to ‘get it’. But back to the book. Michie’s chapter on the positive effects of meditation for healing medical conditions is what makes the book worth reading. For those with life altering medical conditions like MS it’s an investment in your health to hurry up and meditate.
well as anyone more experienced. No New Age flakiness either, just a good short book that gives you the essential tools to the path of a habitual mediation practice. Pam Schartner
This book is great for beginners as
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MS Network Magazine 05 | 2014
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Sorento Care
Sorento Care Vanessa’s Story Holistic & Inclusive Support You Deserve!
www.sorentocare.com.au Who are we? Sorento Care is an Adelaide based, innovative, quality-accredited, notfor-profit organisation that provides specialised in home care, supported accommodation and rehabilitation services to people with mental health issues and a range of physical and intellectual disabilities in South Australia and New South Wales. Sorento understands that people now have a choice over the delivery of their day-to-day care, experiencing different needs, abilities and aspirations that can be easily encouraged and supported in a safe and friendly environment. We are committed to delivering our services with a flexible approach that focuses on the unique desires and wishes of the individual, their family, friends and carer.
What’s New? Throughout 2014, Sorento Care will continue trialling a range of low cost “assistive” technologies and simple, affordable home modifications that will enable people with disabilities more control over their daily living environments, enabling them to live comfortably at home with peace of mind and independence. Take a virtual tour by simply visiting the “New Wave” house on our website and check out the range of assistive technologies currently available: http://www.sorentocare.com/whatwe-do/virtual-tour Low Cost Accommodation Throughout 2014, Sorento Care is pleased to announce that in collaboration with Claremont Operations, it is offering clients a range of affordable and modern rental properties throughout the Adelaide CBD and surrounding suburbs.
How can we help?
All our properties cater for people with disabilities seeking flexible, low cost accommodation and a vibrant, carefree lifestyle. We also try to cater for pets in all our accommodation models. Subject to availability, we can offer short term stays and respite accommodation and can arrange to meet all “low” to high care needs of clients. This could benefit families who are visiting the city for appointments or just want to have some “quality time” and re-charge. Don’t forget to leave your comments on our contact us page: http://www. sorentocare.com/contact-us/southaustralia Contact Us: If you would like more information on the services available through Sorento Care, or wish to enquire about accommodation availability, care options or our in home support program, please visit our website at www.sorentocare.com.au or contact the Corporate Office on 08 8155 5070.
With assistance from our qualified carers, Sorento Care can help with your day-to-day needs by providing “one on one” in-home support and care management, the option for our daily in home meal delivery service, involvement in activities and local social groups, independent living skills workshops, rehabilitation and the choice of transition to work programs should you wish.
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5 Minute Fiction
5 Minute Fiction Partners by Neil Overton They had been partners for almost 5 years now, ever since they had met each other in that little store in the city. He a musician, she a dancer, they complimented each other’s abilities and made a perfect couple. They spent their time together, almost inseparable. As street performers they made a modest living, he would play, she would dance. She enjoyed performing for the crowds, some of them were watchers who just stood and enjoyed the performance and then walked away afterwards, giving nothing in return, some were givers, they would watch and then offer money for the privilege of seeing their show, they would know how hard she had worked for them and would freely give her their coins. Watchers or givers, it mattered not to her, she loved to dance, she loved to feel the music seep into her and make her move, she loved to make him happy and listen to his music. He loved her, he cared for her when she was sick, he bought her presents when he could afford to, she had given him her attention and her devotion. He looked at her dancing to his song, watched her movements as she danced before him, and knew that even as she danced for the crowd it was for him she danced. They lived together in a small apartment outside of town, it was not much really, just a place to sleep, as a single man he had never really had much use for luxury and now they were together it suited them fine. He remembered the argument he had with his landlady when he had first 16
brought her to live with him. She had strict rules about that sort of thing, and it had taken him a long time to convince the landlady to let her stay. But now they got on fine together, many times while he was out, she would go and stay with the landlady till he returned, they got on well together and it made him happy to know she had another friend she could be with when he was not there. It was early as they shared breakfast together, he ate a big meal of pancakes and coffee, she ate fruit and cool clear water. They dressed and left for the street, arriving early to set up. There were already people rushing up and down, busily going about their business, some shopping, some on their way to work, some just out enjoying the early morning freshness that played across the bay. He set up by a big sign that welcomed tourists to the city, it provided shade from the hot sun and allowed her to dance without tiring so quickly. He helped her into her costume and looked at her and smiled, a radiant smile that made her happy too. He started to play, happy joyful music that made the passersby stop and stare. A crowd began to gather around them and she began to dance, slowly at first and then faster and faster, the watchers looked on in amazement as she danced and twirled to the music, she span and jumped and twisted, moving always to the sound of his song. When the song stopped, she stood and looked at the crowd as they clapped at her performance, the watchers moved on and the givers tossed money to her. A lady approached the music maker and spoke to him. “What a cute Monkey you have there� she said as she dropped a coin into her cup.
MS Network Magazine 05 | 2014
ChiBall
Our People
Come’n’Try ChiBall A Come ‘n’ Try ChiBall class will be offered through the MS Society in the near future. ChiBall is designed to help with understanding the concepts of Traditional Chinese Medicine such as balance (yin and yang) and energy (Chi). Each element of ChiBall is used to create body awareness and raise energy levels. The elements of movement which are typically included in a class are outlined below, along with the benefits. •
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Tai Chi/Qi Gong (pronounced as Chee Kong) prepares the breath for the ChiBall Dance element. Tai Chi is used to ground and gently warm the body, build awareness, and calm the mind. Benefits include increased concentration, flow and relaxation within movement. Qi Gong exercises stimulate energy within the body and prepare the breath for the ChiBall Dance element. ChiBall Dance sequences are included to vigorously stimulate the breathing. As the diaphragm is exercised and stretched and then allowed to relax, the breathing gradually reverts to a more natural state. ChiBall Dance involves light cardiovascular exercise. Yoga follows ChiBall Dance to build strength and flexibility.
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Pilates is used to build core strength and to bring the energy levels down a step.
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ChiBall Release introduces more relaxing and releasing exercises or lessons, which are based on the principles of the Feldenkrais method. This is a way of learning to move more freely and easily, to carry less stress in your body, to stop doing the things that cause you pain.
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Relaxation / Meditation
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All classes end with a short phase of relaxation to allow the body to heal, the mind to calm and the spirit to soar. It is the final stage of a ChiBall class that aims to achieve balance and wellbeing.
Come ‘n’ Try ChiBall sessions were successfully held in May at the ECH Wellness Centre, Henley Beach. Clients found ChiBall a fun way to stretch, exercise, relax and an opportunity to meet with others. If there is sufficient interest we would like to have regular ChiBall sessions offered in the western suburbs and anywhere else there is a group of people keen to join in. Contact MS Assist to express your interest if you would like to join a ChiBall group.
Gemma Mayfield Job Title: Occupational Therapist But what do you do? I aim to help clients to achieve greater independence, comfort and safety using the various resources available, which may include provision of adaptive equipment or learning a new approach to doing tasks or through improved access in their home. How long have you worked at the MS Society? 19 months What is the most enjoyable part of your job? Seeing the expression of delight when a client’s problem has been resolved Describe yourself in 3 words. Determined, compassionate & diligent. What’s your favourite food? Cheesecake! When you’re not working at the Society, how do you spend your time? I enjoy mountainbiking, sewing and spending time with my friends and family.
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Peer Support
Peer Support The Peer Support program continues to connect people with MS to each other to provide opportunities to meet and discuss their MS with others experiencing similar issues. There are a number of programs and groups in action - read on to find one that is suitable for you. There have been a number of new groups that have started meeting this year, they all welcome new members to join them.
Darwin – Please come and join old friends and new friends to share information, discuss new treatments, alternative therapies and coping mechanisms and to enjoy catching up over coffee or brunch. The Top End group meet at various places for coffee and brunch. Contact Sarah 0439 885 604 for details of the next event.
Adelaide Hills – Mount Barker – meeting on 3rd Monday each month, 6.30 pm, Auchendarroch Tavern, Mount Barker. Contact David 0410 451 301
Gawler evening group – meeting on various days and venues at times to suit those unable to attend daytime functions. Contact Helen 0403 295 348
Alice Springs – Meeting in the second week of the month over lunch, time and venue of next group to be advised. Contact Marilyn 8953 0702
Parents with kids – a chance for parents with MS to chat while their children play. The group has met at various indoor & outdoor play areas. Contact Ainsley 0408 822 794 or MS Facebook for details of the next event
New Peer Support groups
City based for workers –meeting for a meal on the 2nd weekend of every month, alternating Friday nights/ Port Pirie – meeting on the 2nd Saturday brunch at various city Thursday of each month, 6-8pm, GP locations. Contact Jess 0403 155 696 Plus Health Care Centre, 50 Gertrude St, Pt Pirie. Contact Anne Clare – have started meeting on 2nd Tuesday each month, 11.00am at Disabilities SA, 1/17 Lennon St, Clare, but will also be visiting various eateries for lunches. Contact Gwen 8842 4256
0448 321 610
Newly Diagnosed – A ‘pop-up’ group for 4-5 months, open discussions facilitated by MS staff and people living with MS, about managing health and Copper Triangle – now meeting in lifestyle so that you can get on with your the 2nd week of the month at 11.00 am life. Once a group forms the location of for coffee and lunch. Day and venue meetings will be decided, most likely to varies. Contact Allan 0498 386 949 be held early evenings. Contact MaryAnne Edge 8203 6600 We are also seeking interest in:
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Support groups in Whyalla and the Riverland
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Starting an Overcoming MS group in the southern suburbs of Adelaide
MS Network Magazine 05 | 2014
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A group in the western suburbs of Adelaide
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Support groups for Family and Friends of those with MS
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Under 35s. There are a number of young people who would like to meet with others their own age (sounds like an ad for a dating service!) and have suggested a group for the Under 35s. Maybe meet at weekends for lunch or brunch, bring your partners – if there is only 1 group meet centrally but if there is enough interest for 2 groups (or more) you can choose venues north, south or wherever!
Please contact Mary-Anne Edge if you would like to join one of these groups T: 8203 6600, E: medge@ms.asn.au
Online support 183 members and counting! 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 If you’re hesitant to join a group or would just like to speak privately with another person living with MS, please contact the MS Society on (08) 7002 6500 to be connected to a peer mentor.
Peer Support
Peer Support Groups meet in the following areas: Location
Day/Time
Venue
Group Coordinator
Barossa
3rd Thursday of each month, 11am
Tanunda/Nurioopta
Denise Hoffman (08) 8565 6245
Hard Yakkas (Salisbury)
Last Wednesday each month, 12pm Cafe Aqua, Salisbury
Tallia Couter 0403 766 157
Fleurieu
Random Tuesday, 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, Jennifer Cotis 0407 888 492 Gilles Plains
Clovelly Park
4th Friday each month, 12pm
Tonsley Hotel, South Road, Christine Sutherland (08) 8276 Clovelly Park 3779
Mount Gambier
1st Friday each month, 12pm
Commercial Hotel , Commercial Street West
South East
3rd Thursday each month, 10:30am The Settlers Cafe, Naracoorte
Samantha Loechel 0427 662 165
Noarlunga
1st Thursday each month, 12.30pm
Virginia Stanfield (08) 8382 5244
Jenifer Carpenter (08) 8738 2343
Various Lunch Venues
3rd Thursday each month. 12.30pm GP Super Clinic, Noarlunga Eastern Suburbs
3rd Thursday each month, 2pm
Burnside Community Centre
Paula Hardy (08) 8379 8220
Port Lincoln
2nd Tuesday each month
Venue and times vary
Rick Cunningham 0427 999 029
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
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Information Seminars
Information Seminars 2014 The MS Society of SA & NT provides a series of information programs focused on maintaining a healthy lifestyle and keeping you up to date with the latest information and research on MS. A variety of venues is offered 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 sessions to be recorded and available to you. Family and friends are also welcome to attend these education seminars. The arrangements for a number of information sessions have now been finalised and these details follow. Other events yet to be finalised include: A travel night – with consultants discussing suitable destinations, accommodation and activities, with advice on travel insurance and other useful tips.
Workshop – How to live with MS Saturday 17th May 2014 10.00 am – 12.30 pm Topics: Presentations on fitness and exercise (MS Physiotherapist), medication and symptom management (MS nurses), taking control with lifestyle changes (MS clients), aids and appliances to make living easier (MS Occupational Therapists), employment support (Multiple Solutions) and other supports available. Located in the picturesque foothills of Clapham just 20 minutes south of the city centre, it is the perfect location to escape the frantic pace of life and allow your mind, body and soul to be re-energised. Morning tea provided Where: Balyana Conference Centre, cnr of Strathcona Ave & O’Neil St, Clapham
Cooking Up a Storm - Yummy! Healthy! Easy! Be Inspired! Saturday 14th June 10.00 am – 1.30 pm Join Natalie Playford from Cooking Up A Storm for a fabulous hands-on cooking class designed especially for the MS Society. We will cover plant-based proteins, shortcuts, dips, salads, soups, mains and desserts in this fun, informative, easy and practical vegetarian cooking class, using easily sourced ingredients. With a state of the art kitchen to work in and lunch included, you’ll have a great time and take home a booklet of recipes you’ll want to cook over and over again. Class is suitable for those needing to be seated. Where: Kildare College, 96 Valiant Road, Holden Hill
August 2014 - A seminar for the Newly Diagnosed with Neurologist James Leyden, city venue.
RSVP: Friday 2nd May by contacting MS Assist via T:1800 812 311 or email: msassist@ms.asn.au
RSVP: Friday 30th May by contacting MS Assist via T:1800 812 311 or email: msassist@ms.asn.au
October 2014 – How to Live with MS Workshop, northern venue.
This workshop will be repeated in November 2014 at a northern venue.
Cost: $38.00 per head includes all food and utensils.
Further details on these events will be advertised on the MS Society web page, MS Facebook group and page (www.facebook. com/MSSocietyofSANT) and the enewsletter. If you have any suggestions to help with the planning of education seminars and workshops please pass these on to Mary-Anne Edge, Coordinator Education and Peer Support phone 8203 6600 or email medge@ms.asn.au
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MS Network Magazine 05 | 2014
www.cookingupastorm.com.au
Information Seminars
“If one person in a relationship has MS you both deal with the effects...” Planning for your Future Wednesday 23rd July 6.30 pm – 8.30 pm A Panel discussion with experts from the fields of Legal Rights, Centrelink, Financial planning, Superannuation and Insurance. This interactive session is aimed at those in the workforce, come along and have your questions answered by experts in their field. Where: Thebarton Community Centre RSVP: Friday 9th July by contacting MS Assist via T:1800 812 311 or email: msassist@ms.asn.au
Managing an MS Bladder Intimacy and Sexuality Friday 19th September 12.30 pm – 3.00 pm Urologist, Dr Samantha Pillay, will provide her expert knowledge on how MS can affect the bladder and the various treatment options available. Rosalie Donhardt, a continence nurse will provide practical support for continence issues, products and how to access funding. Dianne Ervine, is a sexual counsellor and will discuss how to connect intimately, understand the different sexual needs of partners, and offer new ideas and options. Afternoon tea provided Where: Walkerville Town Hall, 66 Walkerville Terrace, Gilberton RSVP: by Friday 5th September by contacting MS Assist via 1800 812 311 or email: msassist@ms.asn.au
The following article was printed in a magazine produced by the UK based MS Trust. It talks about a pilot group for husbands of women with MS. We would also like to offer this type of support here in SA & NT, for husbands and other family and friends of those with MS. Please read the article and contact Mary-Anne Edge if you would be interested in being a part of an MS Support group for family members
a sort of ‘second hand’ support for me. What advice would I give to the partner of someone who’s just been diagnosed? Expect to fight for much of what is needed for both you and your partner. Do not take no for an answer but make sure you do your homework before reaching for the knuckle-duster. And join a support group as early as possible. Before I joined the group I had been receiving treatment for depression for around 12 months. Prior to this, I was quite chuffed at the way I had been able to manage my expectations for retirement. Attending the Male Carers Support Group really saved my bacon. For the first time in 40 years, I could talk to people who understood. I realised that if one person in the relationship has MS you both deal with the effect of it.
In 2007 Caroline Birch was working as an occupational therapist running a fatigue management class for people with MS. She often heard women in the class talking about how little their husbands and partners understood MS, but found herself wondering who was listening to the men. In 2009 she started a pilot group for husbands of women with MS. It proved so popular she now runs monthly groups in Southampton, Portsmouth and Basingstoke. Here a couple of group members share their experiences. The empathy within our support group is real; undoubtedly because we’re all sliced from the same cake. The pooling of knowledge, much of it hardearned, is of considerable benefit. If one of us has a particular problem, he can be reasonably confident that another group member has already dealt with a similar problem and will be happy to share his experience. As well as anything else, our meetings are an evening out; short period without immediate responsibilities, share banter, repartee and humour. And let’s not forget that the meetings involve a free meal and drinks! Away from the hospital environment, my wife has had good support from her OT, psychologist and GP. For myself, there is little by way of direct support. A notable exception is my employer, who tries to understand the situation and makes due allowance. It should be said though, that any support given to my wife does provide
It was also an incredibly useful forum for MS information, based on experience. It made me realise that no one knows what it’s like to be a carer, until they’ve been one themselves. Without realising it, the group supported me over a period of time, enabling me to adjust to my current situation. I now regularly remind myself how lucky, comparatively speaking, my wife and I are. I wish I had known that there were different types of MS, with different rates of progression. I must have spent the first 20 years or our marriage half expecting to wake in the morning and finding that my wife would be in a wheelchair from that day onwards. What advice would I give other people? Don’t try and cope on your own. Talk to partners of other people with MS. For your own partner’s sake, as well as your own, seek out other people with MS.
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Multiple Solutions
Multiple Solutions Lynda Selkirk - A Self Employment Journey A little over 21 years ago when I was 7 months pregnant, the hospial I was booked in to gave me a list of the things I would need for my baby during my hospital stay. Over the next few weeks I travelled from store to store gathering these items and while I did, I kept thinking how useful, and easier it would be if I could get all of these items in just one place. This prompted me to start some research, I spoke to other expecting mothers to see what they thought. Everyone I spoke to agreed it was a good concept. However, with a new baby arriving, a back injury and multiple other medical problems and a sick mother I had to care for, I had to put the project aside. Over the year I thought about the project often, but it was never the right time. Then, approximately five years ago, I lost my job that I loved and had been successful at for 8 years due to a change in upper management. The stress caused towards the end of the role caused a relapse of Glandular Fever and took me 2 years to recover from. I was unable to work meaning a dramatic reduction in income as I was limited to parenting pension payments. I lost my car, had to sell my house to pay my debts and I was forced into bankruptcy. I struggled with putting my daughter through high school while trying to keep things as normal as possible. The stress caused my Fibromyalgia to escalate. Adding to my troubles, I had arthiriscopes on both of my knees and the onset of Osteo-arthritis in both hands and up to the wrists. I became unemployable and almost a complete shut in for nearly 2 years. Knowing I had to do something about this, I started to play games on the 22
internet to get my brain working and socialising with family interstate and new friends through Facebook. Eventually I came to the realisation that I could not survive on a disability pension, and certainly could not provide for my daughter as I wished to, and I knew I had to do something about it. After a lot of thought and knowing the most I could probably work for someone else was about 8 hours a week, which would need to be flexible, I finally decided to become a Phlebotomist (Phlebotomists or pathology specimen collectors mainly collect blood samples from patients for laboratory analysis), as I was good with people of all ages and I enjoyed helping others. I applied to Centrelink for Mobility Allowance and Study Allowance. In the assessment, the woman was going to deny it, but she saw my determination. I enrolled in a Certificate 2 in Women’s Education at TAFE to get used to studying again in preparation for the Phlebotomy course. For Centrelink to allow me to study, I had to be assigned a work provider. I was assigned to Multiple Solutions with Stuart as my Employment Consultant. Stuart and I hit it off well and I felt really comfortable dealing with him and I felt he had my best interests in mind from day one, not only did he work with my original plan, he listened and asked me questions. I had further blows in my life during this time, my brother was diagnosed with a terminal illness, and my father developed rapid onset dementia and passed away four months later. Stuart supported me throughout all of this and understood that at times, family takes precedence over all else and because of this I was able to do what I needed to without pressure or stress.
MS Network Magazine 05 | 2014
I was in my first term at TAFE course when my 21 year old idea to start my own business reared its head again. It came up in a passing conversation with Stuart, however after I mentioned it, I stepped back to think and it evolved into a plan. Not only was it a good idea, but with the internet now in play, it was an exceptional one. I enrolled in a Certificate IV in small business management at TAFE and delved into researching and costing products, sourcing manufacturers, financial plans, market research, conducting focus groups, designing websites and studying. Everything has been slotting into place, including a trip to China to source a clothing manufacturer. I have also been able to further my passion for fashion, by designing baby clothes, just like I did as a child, designing and making my dolls clothes and again for my daughter when she was a baby, as I now have my own newborn baby clothing line. My business is called ‘Basics for Babies’ and I provide mothers to be with the items needed to care for and clothe their babies during their hospital stay and when they return home. I will have a small and large bundle to choose from containing newborn baby clothes, wraps/blankets and care products, with a ‘Baby on Board’ car window decal as my gift to the new mothers. I hope to launch the business in April this year, and the website address is www.basicsforbabies.com.au It has been a long road with many twists and turns to finally get my idea off the ground but without the support of Stuart and Multiple Solutions I know it would still just be an idea waiting to happen. Lynda
Multiple Solutions
Workplace Support Support for workers and the self employed Does your health impact your work? Does your work affect your health? Multiple Solutions can help you manage both by: • 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
Don’t let your health impact your employment and don’t let your employment impact your health Speak to the team at Multiple Solutions In 2011 a diagnosis of Multiple Sclerosis was given to me. I then got on a plane and spent two weeks in Europe on a concert tour with over 50 school students.
reliability whilst walking and therefore promote mobility without the use of a cane or walker. It was fantastic but so expensive to purchase. So I chalked it up to a life experience and sadly gave it back.
I was numb and in shock and, not knowing much about the disease, was not aware of how this disability would affect my work or home lifestyle. It was such an unknown.
Time has passed and the disease has progressed slowly and I find that physical activity is limited. I hold a very active position at a school and, while they have been very supportive of me, my needs outweigh what they can provide and their expertise.
Once I had digested the information and started some reading and research of my own I came across a website where people could put their name down to become involved in trials. I did a few, but the most important and helpful to me was a trial with a device called a Bioness L300. It is a cuff that sits just below my left knee and supports nerve stimulation to the muscles. I found that this device could lift my foot with
After having a discussion with a fellow MSer I was told about Multiple Solutions and that I should give them a call and see if they could assist me in the workplace. Well I did! and they did! My case worker from Multiple Solutions was fantastic and he set everything in motion. He organised
an OT who came and saw me and assessed me and my workplace. He listened to what my concerns were and asked what would help. I said, as I was laughing internally, that I would like a Bioness, hand rails in some of the areas I need to access and some sort of transport to zoom around the three campuses. Never in a million years did I think this would come to fruition. A submission was made and accepted. I received my Bioness, a golf buggy, hand rails, cooling vests and neck tie and a Clax trolley. All my Christmases had come at once!! My longevity in the workplace is now guaranteed. Thank you Multiple Solutions. It is such a relief to have this care and support available. Melissa
05 | 2014 MS Network Magazine
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Client Stories
Client Stories ‘At first it was hard to put my faith in Finlay ... but you build up that trust in them and I know he won’t do anything to put me in danger.’
Heather – and the amazing seeing eye dog, Finlay! It was 1983 and I had just returned from a working holiday around Australia with my husband (now ex husband) and two daughters when I started to have some vision problems. My GP thought this was due to migraines and I started to have migraine injections about 4 times a week. Gradually my vision got better and returned to normal. Then one night I was in the shower and the hot water was cold and the cold water was hot! I went straight back to the doctor who referred me to a neurologist who put me through the various tests to determine that I had MS. The neurologist took me off of the contraceptive pill as it reacted with the steroids that I was on, I fell pregnant, and then again. Two more daughters making a total of four altogether! It was hard at times with the four girls and MS. My health fluctuated over the years as I struggled with balance, which has always been terrible, and vision problems. I am now partially blind and had to surrender my licence in 1998. I can see things when they are close up, but anything at a distance is very blurry. Over the years I have always maintained the attitude that I need to keep doing things while I still can – use it or lose it! This means I have tried to stay active over the years and with long walks which I think has helped with my balance and walking. I also credit goji berries with some increased mobility. After I started taking them I noticed an improvement in my walking. I am usually sceptical about these things, but both my walking and ability to navigate steps has improved. My doctor looked them 24
up and said they are all natural so if they were doing me good, stick with them. I find they also help me sleep better. A few years ago I started to have some trouble crossing the road. When I looked left to right to check for traffic, my balance would go. Around the same time I saw an ad on TV featuring Rachael Leahcar (from The Voice) talking about her dog from the Royal Society for the Blind. I thought this was something I might benefit from so I called information asking for the number of the Seeing Eye Dogs department. They put me through and took a few details and sent someone out to meet me and hear about my situation. I thought it was someone from Royal Society for the Blind, but it was actually the Seeing Eye Dogs, who are a completely different organisation! After telling them my story, they said they thought I would be a good candidate but they had to wait for an appropriate dog to come along. About seven months later I got a call, it was Harry from Seeing Eye Dogs, asking if I was prepared to go to Melbourne as they had a dog they thought would be suitable for me. As Seeing Eye Dogs don’t have an office in Adelaide, all the training for people living here is done in
MS Network Magazine 05 | 2014
Melbourne. Off I went for three weeks, flights, accommodation and food all fully funded, I only had to take some pocket money to spend. It felt like winning the lottery! Once in Melbourne I got to meet the beautiful golden retriever Finlay and we hit it off straight away. They brought him to my room to let us spend some time together and he sat alongside me and wanted to be patted. We bonded straight away. I’ve had dogs before, but none quite like this one. We began our intense training together. First, you are trained on how to use the harness without the dog, then later with the dog and trainer walking behind. The trainer then came back to Strathalbyn with me for a week to help Finlay and I adjust to the various shops and routes I would be walking. On just the second day we had been home, the trainer told me to ask Finlay to find home. I thought there was no way he would know this yet, but off he strutted straight to the driveway – it was incredible. They say good things happen in threes. I got Finlay, a fortnight later Housing SA rang to say they had a unit in Mt Barker for me and then the third thing, I got a phone call from Seeing Eye Dogs, they have bags of
Client Stories
dog food donated by their volunteers every year and Finlay’s number came up, we got two bags of dog food which saved me over $160! At first it was hard to put my faith in Finlay as I was thinking ‘he’s just a dog’ but you build up that trust in them and I know he won’t do anything to put me in danger. A few months after I got Finlay, I was booked to go on a cruise around New Zealand with a friend. I had decided cruising is the best way to holiday! You only unpack once, all meals and accommodation are included – I find it works out cheaper than a road trip! I left Finlay with his puppy carer while I was away and I worried the whole trip that he wouldn’t remember me when I got back. After I returned from the cruise and she brought him back, she simply dropped the harness. He came straight over to me and jumped up and put his paws on my shoulders. He knows he’s not allowed to do that, so he sat down and looked around then looked up at me and must have though “damn I don’t care” and he put his paws on me again – he definitely didn’t forget me! He comes everywhere with me now. He’s not like a normal dog, he’s not fussed about food at all. I can take him to a café and he just sits next to me. He knows he doesn’t get his food until I blow his whistle. He knows the difference between work mode and when he can just be a dog. As soon as his harness goes on, he knows it’s time to work. Since having Finlay I have my independence back and he is keeping me active. I am walking so much more, and it’s a real comfort not to be walking by myself.
Seeing Eye Dogs Australia Seeing Eye Dogs Australia, a division of Vision Australia, is the only national breeder, trainer and supplier of Seeing Eye Dogs. It takes a lot of time, love, patience and money to raise these special working dogs that will one day become the gift of independence for people who are blind or have low vision. For the right person, a Seeing Eye Dog is a far better option than using a cane allowing them to move more quickly and navigate obstacles with much more reliability and safety. A Seeing Eye Dog can use its own initiative to stop at roads and move its owner out of the path of danger. A Seeing Eye Dog also provides constant companionship, alleviating the effects of loneliness, depression and contributing to an all-round better quality of life. All Seeing Eye Dogs are provided free of charge. However, you are responsible for the cost of feeding and taking care of your dog. If you would like more information about Seeing Eye Dogs Australia, visit their website http://seda.visionaustralia.org/ or call 1800 03 77 73
Heather
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Client Stories
Client Stories ‘Our heads were spinning with one thrilling sight after another... so much so that we almost reached the blasé stage of “Oh, by the way, there was another elephant back there”’
Holiday-Adventures by Christine Nelson When I was diagnosed with MS in 2007, one of the things that seemed inevitable was that holiday adventures, as we knew them, were numbered. I can no longer walk for hours exploring the hidden treasures that new places hide. I struggle with crowds. I get terribly, numbingly tired. Every year we think “We’d better do it now – I might not be well enough next year.” So when we planned a trip to see family in South Africa, we decided to treat ourselves to six days of indulgence in the Kruger National Park. Apart from the long aeroplane trip – broken for two days in Perth to keep it manageable – it was the ideal holiday for me sitting in a car with just my husband Frank, for company enjoying the scenery and wildlife. I forget about the limitations imposed on me by MS, the worries and frustrations, the concerns about the future – and revel in the moment. Every visit to a game reserve is the best ever. I think this is because it is a place where one has to live completely in the present; you are driving slowly, no traffic, little stress – and able to constantly scan the bush on either side for the movement of wild animals. There are snatches of conversation but they are mostly along the lines of: “Stop... no, back a bit... no, sorry, I thought ... hang on, what’s that bird?” (scramble to get the binoculars up and the bird book out). “It’s bigger than a starling... some white on the wings...” “Can you see the beak?” “No, wait, yes... it’s quite short...” “Black?” 26
“ummm....” “Oh wow! Look at that!” “What?” “The rhino the other side of the tree on the right. It just moved out of the shadow.” “Where?” “To your right a bit. No, not that far...” Apart from the wonderful sense of living totally in the now, it was our first visit together to the Kruger, and before leaving we splurged and bought Frank some good binoculars and I got a good camera with a great optical zoom. We hadn’t even entered the park when the wisdom of these purchases became evident. We parked at the gate and wandered around a bit before beginning the trip to the camp where we would be staying overnight. The gate-guard came up to me. “Do you have binoculars?” He asked. “Yes, they’re in the car” I responded assuming he was going to offer to hire me some at an elevated price. “Get them” he urged, “and I will show you a lion.” “I don’t have the car keys” (and anyway, what are you talking about? A lion? Stuffed? Why binoculars? Is someone going to leap out of the bush and steal them if I get them? – one does become tragically suspicious in South Africa, I’m afraid.) “But there is a lion – just there!” He pointed to a line of thorn bush about 100 meters away, on the narrow no-
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man’s-land between river and gate. A glow of excitement began to spread. To see a lion is a thrill – Frank had never seen a lion in a game park. “Maybe I can see it with my camera?” I suggested. We crossed the parking bays and he stopped me, “No, do not go further. She is there.” “I think I can see something” I assured them politely but doubtfully (we had now been joined by two other guards – at this stage Frank was still ‘inspecting the facilities’). Not convinced, I lined up the camera, and zoomed. A gust of awed “ahhhh” tickled each ear as the guards, peering over my shoulder, saw the picture jump into focus. It was indeed a lioness (and she was, in a manner of speaking, stuffed – which was why she was simply lying around enjoying the sun while digesting her meal). I realised that these poor gate guards had spent the day telling other people – tourists – about the lion, but hadn’t actually seen her themselves. How frustrating for them! “Do you have binoculars” was in fact, code for “There’s a $)@*$@_$)* lion there and I want to see it too!” Frank arrived, with his binoculars, and we all feasted our eyes in turn. Friends are made easily as we all have one purpose – to see the animals. As you pass a car, you slow down, wind down the windows and share
Client Stories
information, “We saw a hyena just back a bit.” “Really? Thanks. There’s a good viewing of kudu just over the rise.” Of course most of the helpful advice is useless as most of the game is on the move. We saw plenty of examples of the car in front of us just clearing a corner when a giraffe, or some other beast, would amble out of cover and cross the road. Seconds later, it would be gone. At one rest camp on the banks of a river, people happily shared the light of their powerful torches as a family of hippos frolicked through the shallows before disappearing into the reeds for their nightly feed. There was something special about seeing them at night, even though we saw plenty sunning themselves by day too. There is a certain amount of rivalry too, especially where the Big 5 are concerned. Two cars spotted a leopard asleep in a tree and pulled up, effectively blocking the very narrow road. Fair enough; a leopard is even more exciting than lion. But one looks, admires, photographs – and then moves on, right? Apparently not. By the time we arrived, eight cars were squashed up as close to the gap in the trees as possible, with the occupants eagerly scanning the impenetrable bush for leopardspots. News passed between opened windows (remember, nobody is allowed to leave a vehicle; it is dangerous) “Leopard... leopard in that tree...” We all tried to follow the angle
of the binoculars of the lucky spotters, so that we’d be able to see it the instant we could move into visual line. And we sat. And sat. And sat. Looking into dense thorn-bush ...
straight to the reservoir, and stretching up...up...up with his trunk, he reached the cool, clear water stored there and drank for a good ten minutes. After that he was quite calm.
What were those people doing? The leopard was fast asleep; they must have had all the possible pictures they could take within the first three minutes. They sat there for nearly 30. In the end there must have been 30 cars stuck there! Frank was so fed up that he refused to slow down as we passed, so all I have as evidence is a blurred image and the assurance that those spots do belong to the solitary big cat.
At a waterhole we watched the ‘bachelor boys’ – three adolescent rhino bulls. One of them was the wanna-be. The other two made it very clear that he was to stand guard while they drank. And yes, a nearly fully grown rhino can look scared! He stood and watched the cars, while the other two drank their fill, had a wallow, and then strolled off into the bush... “Hey, fellas, what about me? Hey, I haven’t had a drink yet... hey, wait...” and he trundled off after them. Poor chap; they had ditched him. The next morning he was lying beside the road on his own, in a massive sulk, while we saw the other two marking territory a couple of kms away.
We saw an incredible assortment of game animals, but we were actually just as thrilled with the birds. With the help of the binoculars and the camera, we were able to positively identify so many – about 76 different species, most of them new to us. Our heads were spinning with one thrilling sight after another... so much so that we almost reached the blasé stage of “Oh, by the way, there was another elephant back there”. What’s an elephant when you could be spotting something 10cm long and coloured with every colour of the rainbow? And yet, they (the elephants) are the most majestic giants of the world. We watched mothers with young of all ages – even one very new calf being shielded from our view by a retinue of older cousins and aunties. One young bull was, we were warned, very aggressive. We pulled over and watched as he mock-charged a car (he won – the car left, fast.) In fact, the poor elephant was just very thirsty and the cars/road were between him and the waterhole. When he plucked up the courage and charged over the road, he didn’t even bother with the waterhole. He went
Inevitably, the six days passed and we had to leave. We had agreed that it was to be the trip of a lifetime and yet even as we left, still craning our necks for a last look, we began to discuss how we might do it again ... one day. We are agreed that having something to look forward to is an essential part of coping with the reality of MS in our lives. I will never climb Everest, or kayak down the Amazon, or walk the Camino pilgrimage but I can dream of a return to the mighty game parks of Africa and another holiday of a lifetime.
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MS Network Magazine 05 | 2014