07 | 2013 MS Network Magazine
Network
5
News Case study: Driving – maintaining your lifestyle Our people MS Assist – The “New Look” Client Services team MS Choice Awards Considerations when starting a family Peer support update Workplace Solutions Client stories Kiss Goodbye to MS Fundraising
The magazine of the Multiple Sclerosis Society of SA & NT |
7 8 10 12 18 20 22 24 28 35
www.ms.asn.au
In this issue
In this issue From the Editor................................................................ 3 CEO report............................................................................. 4
6
7
12
18
23
24
28
32
News................................................................................................5 Case study: Driving – maintaining your lifestyle................................ 7 Our people............................................................................ 8 MS Assist – The “New Look” Client Services team........................................... 10 MS Choice Awards................................................. 12 Considerations when starting a family........................................................... 18 Peer support update......................................... 20 Workplace Solutions......................................... 22 Client stories................................................................... 24 Kiss Goodbye to MS...........................................28 Fundraising........................................................................35 Locations...............................................................................36 MS Head Office PO Box 377 Salisbury South DC SA 5106 P (08) 7002 6500 Toll Free 1800 812 311 F (08) 7002 6599 E ms@ms.asn.au MS Northern Territory PO Box 867, Nightcliff NT 0814 P (08) 8948 5300 F (08) 8948 5344 E nt@ms.asn.au www.ms.asn.au MS Society Privacy Policy: The MS Society of SA & NT is committed to the protection of private information. A full copy of the MS Society Privacy Policy is available by phone: (08) 7002 6500 or online at www.ms.asn.au Disclaimer: Material published in Network may not be reproduced in any form without permission from the MS Society. Any views expressed are not necessarily the views of the MS Society. All reasonable efforts have been taken to ensure the accuracy of any content but no responsibility can be taken for any error or error by-omission. Guest contributor: Spiro Koulocheris (interview with Kirsten on page 34).
2
MS Network Magazine 07 | 2013
From the Editor
From the Editor A number of the MS Society offices also held Kiss Goodbye to MS fundraising days; we have included a number of photos of all the fun on pages 28 & 29.
8
20 Hello everyone, We had some brilliant fundraisers get behind the Kiss Goodbye to MS Campaign this year which resulted in some great media coverage in newspapers and on the radio.
26
36
A big thank you to Brittany Christensen, who was featured on the front page of the Advertiser on 1 May and various other papers during May, you and all the other fundraisers who had their stories featured did a fantastic job of helping us to raise awareness of MS. From cocktail parties to school casual days and cupcake stalls, the fundraisers from SA and NT did an amazing job. Well done to everyone who was involved, and a big shout out to all those who helped with the Bunning BBQs – we hope to do it all again next year! You can read about everyone’s Kiss Goodbye to MS adventures, starting on page 30, with stories from Jordana McCallum, Purdie Barr (pictured on our cover) and Norelle Branford who all held Kiss Goodbye to MS Fundraisers and our very own Kirsten Alderson, who for the second year running, committed to riding her bike every day in May to raise awareness.
In this edition there are few different stories and articles about MS and driving including the use of hand controls. Many of us take driving for granted. In Australia, especially in the regional centres and country, driving is an essential part of life and allows us to maintain our independence and our networks. Sometimes MS may become a barrier to our ability to keep driving. Our Occupational Therapy department run a Driver Assessment program that aims to increase your driver safety and ability to continue driving. There is more information on page 7. The MS Choice Awards were held on World MS Day, 29 May. I was unable to attend this year, but have heard great reports from all who attended. We had a whopping 19 people win awards this year. You can read all of their inspiring stories starting on page 12. We will open up the applications for 2014 shortly, so keep an eye on our website if you would like to apply. Those of you thinking about the City– Bay this year, time to start training!!!
Renee Meredith Editor Network MS Society of SA & NT Inc feedback@ms.asn.au
07 | 2013 MS Network Magazine
3
CEO report
CEO report It was heart warming to see so many supporters get involved in the Kiss Goodbye to MS campaign in May. The funds raised, and the awareness of MS generated by all the events, parties, BBQs, dinners, picnics and other outings, are invaluable. The participation of so many people in these ventures was awesome, and my personal thanks go to all of you who went to so much trouble, and often expense, to organise groups for all the activities.
What an amazing few months we have all had here at the MS Society! Following a new five-year contract awarded to Multiple Solutions employment service by the federal Department of Education, Employment and Workplace Relations (DEEWR), we have seen the number of job seekers on our books spike at 874! This is a very good sign for us, as it gives us the opportunity to help another 874 people living with disability to enter the workforce and regain some independence and self-esteem. As we say when we talk to employers, these are 874 people with ABILITY, not disability. If you know of anyone with a disability seeking work, or who is having difficulties in their workplace because of their disability, PLEASE get them to contact Multiple Solutions, because there is so much we can do to help, including minor and major workplace modifications, special equipment, liaising with employers and many other actions as well. There is no need to feel uncomfortable in your workplace. 4
MS Network Magazine 07 | 2013
On World MS Day (which is always the last Wednesday in May), we held our annual MS Choice Award presentations at the Unley Town Hall. This year we had 31 applications for awards; unfortunately the available funds meant we had to limit awards to 19 applicants. The judging panel, chaired by a well known business man, had a most difficult task in allocating the available funds to the very deserving applicants. Those who did not get an award on this occasion were also very deserving, and the only way the panel could separate the applications was by looking at the likely long-term benefit of each application. It was a stunning night, and so many lovely stories were told and savoured, and many tears shed; but what came across the most was the determination and strength shown by so many people with MS, their families, and carers. MS Assist is really taking shape and will make access to the Society and to services much more streamlined in the future. The new number to ring for ANY assistance from the Society is 1800 812 311, during normal business hours.
Whilst we have been able to offer services to some city-based members in the past, we are now looking for partnerships with service providers in country and rural areas so that services are more accessible for all. If you know of someone in your area who would be willing to enter into such a partnership, I would love to hear from them! I wish I could write reams on the new DisabilityCare Australia (formally called the NDIS) but there is still little detail available as to how it will work to the benefit of people with MS in South Australia and the Northern Territory. I am sure more information will emerge as experience is gained in the initial rollout sites across Australia. Until I get reliable information, I prefer not to speculate. I have had the opportunity to meet with many people with MS in recent times, in both the city and country locations. I want to thank all involved for the very warm welcome afforded to me, and the invaluable information you passed on to me about living with MS. Please remember to invite me to your local MS event, function or gathering, so that I can meet you all.
Graeme Warnock Chief Executive Officer MS Society of SA & NT Inc
Page heading 1 | Page heading 2 | Page heading 3 News | etc
News
eHealth Records The Australian Government has been working to create an electronic health record (eHealth Record). The eHealth record will be a file which
have at your local doctor’s surgery, but it provides a snapshot of your health information that everyone involved in your care can use. The eHealth record is controlled by you, which means that you are able to decide what information is put into the record and who is able to see it.
health providers can access to see medical information about a patient. This information may come from many sources including General Practice
The eHealth Record may have advantages for the following groups: n
and Hospitals. The eHealth record does not replace the record you might
People with complex or chronic care needs who receive care from a team of health professionals (including
THE Therry dramatic society proudly present
BUY your tickets today! Adult $25 Concession $20
n
n
People who will need care as they travel, because they have a mobile lifestyle or work in a variety of locations. Young people, so that the eHealth record can become their health history for life.
The eHealth Record is free to use and over time, a range of service providers will be able to use it.
Wednesday 28 August
Wednesday 13 November
For tickets & information contact Sonya from the MS Society (08) 7002 6500 or srowell@ms.asn.au
doctors, nurses, pharmacists, physiotherapy, podiatry etc)
We encourage you to visit www.ehealth.gov.au for more information and to register online. Alternatively, you can register via telephone on 1800 723 471. You will need to answer some questions and provide some proof of identity to set up your eHealth Record. 07 | 2013 MS Network Magazine
5
News
News continued MS Bookshop
PEEP INSIDE… and you will discover that people who use wheelchairs or have any other disability are regular people, with feelings, who live their lives a little differently. Some things are tricky for them, but they often come up with clever ways to do things. They like to go to parties and dress in nice clothes. They laugh and have fun, just like you.
‘What we’re Wheelie like…’ We’re regular people and we use a wheelchair.
That’s ‘What they’re Wheelie like…’ The book can be purchased from www.wheelielike.com
Our Red Hot Summer lottery winner Peter, pictured left with MS Society Fundraising Manager Suzy. Congratulations Peter! 6
MS Network Magazine 07 | 2013
Case study: Driving – maintaining your lifestyle
Case study: Driving – maintaining your lifestyle Fay was diagnosed with relapsing remitting MS 25 years ago. Currently she mobilises with a manual wheelchair, continues to work and lives an active and independent lifestyle in Alice Springs. Fay has a varied driving history, having driven manual four wheel drives and motorcycles. In the last 10 years however, she has held a conditional driver’s licence to operate automatic cars fitted with power steering and air conditioning. Fay has also self funded a Wymo system on the roof of her vehicle for wheelchair stowage. In early 2012, her specialist recommended to Northern Territory licensing, that her license be suspended on medical grounds, pending assessment for driving with hand controls. Fay faced a dilemma as she required her license to work, travel to church, the supermarket and various appointments. To make matters worse, it soon became apparent that there were no Driver Trainer Occupational Therapists or modified vehicle Driving Instructors operating in the Alice Springs area. Soon after losing her license Fay contacted the MS Society Driver Assessment Unit for advocacy and assistance in defining her options. Our research revealed that she would have to undertake an intensive program either in Darwin or Adelaide. The Darwin program cost was a minimum of $1000, whereas our Adelaide based program was offered for free. Both programs also carried additional costs for the lessons required and car modifications.
Fay decided to select our Adelaide based program and a two week timetable was proposed and costed, with Northern Territory licensing satisfied with all arrangements. A date was set for September 2012 with Fay and her husband to fly to Adelaide. Assistance was provided in locating a hotel with disabled access and suitable shower facilities as well as investigating possible financial support for the costs involved. Fay completed the pre-driving assessment at the MS Society Greenacres office, followed by an on-road driving assessment at which time suitable hand controls were selected. Initially, having to drive in a completely new way was overwhelming and a little scary, with Fay tending to drive at slow speeds as well as panicking at times when mistakenly over-accelerating. With ten or so regular lessons over the next 2 weeks, Fay quickly improved and was able to successfully pass the licensing assessment. A full report was completed outlining Fay’s assessment/training results, which included recommendations for the modifications required to be fitted to her car. Whilst Fay and her husband visited a vehicle modifier in Adelaide, they chose to have the modifications fitted locally in Alice Springs. Some guidance was provided by our program with some initial “teething issues” with the fitted modifications. Throughout the entire process there was communication with NT licensing and Fay’s GP/specialist.
After much discussion and collaboration to devise the program, followed by two weeks of hard work on Fay’s part, a fantastic outcome was achieved. From an MS Society point of view it was a pleasure to assist Fay through this process. Details regarding the MS Driver Assessment Unit are available on our website. Go to www.ms.asn.au then select the How Do We Help menu to access the MS Driver Assessment Unit Service. Alternatively, contact Merrilyn Fietz, the Driver Trained Occupational Therapist who is available for enquiries on (08) 8198 1400 on Mondays (9 am –5 pm) Tuesdays (9am–3 pm) and Wednesdays (9am–3 pm). 07 | 2013 MS Network Magazine
7
Our people
Our people How long have you volunteered at the Society? Since February 2012 I have volunteered one day each week.
Judy Hayes Volunteer What do you do at the Society? I assist with a variety of activities. Sometimes I work on database administration, scanning, filing and making phone calls. Other days I help send out lottery and fundraising material or ‘Network’ magazines. I’ve also assisted with preparation of special events such as Mud Run and Mighty Swim. On the day of these events you can usually find me cooking sausages on the BBQ.
Why did you become a volunteer? At the end of 2011 our youngest son completed high school which brought to a close many years of helping with Parents & Friends, fundraising, working bees, school musicals and canteen. I have always enjoyed volunteering and felt a bit lost with my desire to be useful. A friend of mine is a physiotherapist at the MS Society and suggested I should apply to volunteer. She introduced me to Lyn Blackmore and the rest is history. I have met some wonderful people here and thoroughly enjoy my day each week here. Describe yourself in 3 words. Practical, reliable and caring. What is your favourite food? Anything cooked by someone else, especially if they do the dishes!
Merrilyn Fietz Staff Job Title: Occupational Therapist (Driver Trained) But what do you do? I work half time and juggle a few areas, primarily, these include: n
When you’re not volunteering, what do you do? I work 2 or 3 days each week as a midwife at the Women’s and Children’s hospital. I’m a wife and mother of two sons. I enjoy going for walks in the hills or the beach when the weather’s good, or the gym when it’s not. I like to try a variety of handcrafts and am currently doing some cross stitch, though I recently went on a WEA course on African basket weaving which was great fun. Of course coffee with friends is always good.
8
MS Network Magazine 07 | 2013
n
managing and servicing the Driver Assessment Unit, in brief, this entails being a ‘go to’ resource for any questions/concerns from clients and their families, and when required conducting pre and on-road driving assessments as well as reports with recommendations for several parties (clients, driving instructors, vehicle modifiers, GP’s, specialists and the Licensing Department), conducting worksite assessments and recommendations for equipment to promote increased safety, comfort, endurance and work productivity. This involves an Employer Assistance Fund application, if eligible, this can be accessed
Our people
through the Employment Provider (eg Multiple Solutions Workplace Solutions Program) n
client home visits to access equipment solutions for MS clients within the home environment, this occurs after receiving a referral from the Disability SA co-ordinator.
How long have you worked at the MS Society? I am now into my 4th year working for the MS Society. What is the most enjoyable part of your job? I see it as a privilege to enter into a person’s own environment at a time of need and really enjoy making a positive difference in their lives. Describe yourself in 3 words. Caring, fun, creative. What’s your favourite food? I can’t go past a good Butter Chicken from the Chefs of Tandoori, I also love cooking especially desserts (not so good for the waistline!). When you’re not working at the Society, what do you do? I have my own family that keeps me pretty busy, so being a ‘taxi service’ for my teenagers’ various school and sporting commitments and keeping them all fed and healthy is the number one priority. I am also quite “arty’, I enjoy painting and when I have time I enjoy glass mosaic-ing and am currently working on a big wall mural. We also have a beautiful chocolate brown Labrador and my hubbie and I really enjoy taking her for walks whenever we can.
Kirsten Alderson Staff
What’s your favourite food? Reese’s peanut butter cups.
Job Title: Fundraising Development Co-ordinator
When you’re not working at the Society, what do you do? I spend my time with my husband and daughter, exploring this wonderful country and taking photos along every step of the way!
But what do you do? I assist in most aspects of the fundraising department, from creating graphics to involvement with events. My desk reflects the diverse nature of my role! How long have you worked at the MS Society? I’ve worked for the Society for about two and a half years. What is the most enjoyable part of your job? So many to mention, but definitely the people I work with. I love being able to be creative and make a difference to the lives of people living with MS. Describe yourself in 3 words. Passionate, unique, fiery.
07 | 2013 MS Network Magazine
9
MS Assist – The “New Look” Client Services team
MS Assist – The “New Look” Client Services team I would like to introduce myself as the new Manager of the Society’s Client Services team, now known as MS Assist. My name is Michelle Anderson and I have worked for the Society for the past 9 years. Much of this time has been spent developing and managing the Society’s Employment Services but I also have over 20 years experience in community disability services both here and overseas. I am very excited at the opportunity I’ve now been given to lead a team of exceptional staff in developing new ways to support people with MS to stay healthy and independent for as long as possible. Your input and feedback will be pivotal in this process to ensure we are providing services to people at all stages of their MS journey. I thus look forward to meeting and talking with as many of you as possible over the coming months! Our aim is to provide a broader range of services that complement the existing health services of Nursing, Social Work, Occupational Therapy and Physiotherapy. With this in mind, I would like to introduce Jim Colligan who will lead our newly created Community Development department. Jim will be responsible for developing community-based services for people with MS in response to the outcomes of the recently published National Needs Analysis Survey. Jim brings an exceptional level of experience in volunteer and community development projects and we are excited at the opportunities this presents. 10 MS Network Magazine 07 | 2013
Jim’s first task has been to get our new MS Assist Telephone Information Service up and running (see opposite page) which we believe is an important resource not only for people with MS but also family members, carers, other health professionals, services and the general public.
and appointments, budgeting, home help, transport and accessing community or government services.
Later in the year Jim will focus on developing a volunteer support service that will enable us to offer both 1:1 and group based support for social activities such as shopping, coffee mornings, fishing, gardening and special interest learning groups covering topics such as Basic Internet Skills. Keep a lookout for Jim’s updates in future Network issues.
She can be contacted at our Head Office on (08) 7002 6500 or alternatively, ask any of our health services staff for a referral.
Another new member of the MS Assist team is Allicia Kitchen. Allicia supports people with issues relating to housing and accommodation, assistance with Centrelink applications
Allicia has already achieved some outstanding results for a number of clients and is a great source of information and advice.
I would welcome any suggestions you may like to offer so please feel free to contact me on (08) 7002 6500 or via email at: manderson@ms.asn.au Until next time.
Michelle Anderson Manager MS Assist MS Society of SA & NT Inc manderson@ms.asn.au
MS Assist
Introducing our new MS Assist telephone information service Thanks to a previous fundraising campaign we have been able to establish a dedicated telephone information service that will provide people with MS, their families, carers, other professionals and the general public access to a wide range of information relating to community, private and government services that can assist you. We recognise that not everyone has access to the internet and sometimes you might have a quick question or need a bit of advice as to where to go for a particular issue. Well, this is where our new information service can help! If we can’t give you the information you need straight away, we will research it and get back to you within 24 hours. You do not need to be a member of the Society to access this service – it is free and available to everyone.
n
n
n
n
n
n
n
n
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 will operate during business hours Monday to Friday, excluding Public Holidays. Callers will be able to leave a message outside these time and our operators will return their call on the next business day.
07 | 2013 MS Network Magazine
11
MS Choice Awards
MS Choice Awards
The MS Choice Awards were held on World MS Day, Wednesday 29 May. This year we had a record 31 applications, which meant a tough task for our judging panel to choose the 19 winners. This year we had a range of prizes awarded from Therafit machines, car hand controls, bathroom renovations, horse saddles and more – you can read all about the winners on the following pages. A big congratulations to all those who received awards and thank you to those who attended on the night. MS Choice Awards are given to people living with MS to help them follow a dream or make a positive difference to their lives, the choice is theirs. Applications for 2014 will open soon, keep an eye on our website www.ms.asn.au
12 MS Network Magazine 07 | 2013
Amanda Curnow
Ann-Marie Compton
Amanda received her diagnosis 6 months ago. A new mum overjoyed with the birth of her beautiful son she just couldn’t shake the feeling that something was wrong. She was diagnosed with MS and as she says “My whole world came crashing down, this was the last thing I expected”.
Ann-Marie is a cake decorator with over 16 year’s professional experience. She was diagnosed with MS less than 2 years ago and since then it has been a roller coaster ride for Ann-Marie and her family.
As a result of her MS and having a young baby to care for Amanda and her husband are saving for renovations to their “not very MS friendly” bathroom. Amanda has been awarded $1,000 towards the renovations of her bathroom. The MS Society will also conduct an OT Assessment to assist in the planning of the renovations, ensuring they meet Amanda’s needs.
At the time Ann-Marie was a 40% partner in a local cake franchise. However, while she was sick, things were changing within her business, developments were not shared with Ann-Marie leading to her losing her investment. Over the last 12 months she has spent thousands of dollars in legal fees fighting the relevant parties involved in the business. As a result of her lost security and financial independence, Ann-Marie has decided to start her own business called “Purr-fect Cakes & Cookies”. Ann-Marie has been awarded a French door fridge that has enough width and depth to hold large cakes and ingredients.
MS Choice Awards
07 | 2013 MS Network Magazine 13
MS Choice Awards
MS Choice Awards continued Carolyn Cordon
Daniel Gray
David Byrne
Carolyn says when she was first diagnosed with MS she searched for an “easy to read” book that would show her how other people with this illness lived and coped with their lives.
Daniel is 29 years old and was diagnosed with MS in 2006. Studying psychology at University was possible as long as he could drive himself there. However, at the end of last year Daniel started experiencing numbness in his feet which impacted his ability to drive and his safety behind the wheel and as a result he withdrew from studies.
Since David was diagnosed with MS he has wound down his advertising agency and has operated as an independent Graphic Artist/Copywriter and Marketing Consultant.
This approach proved largely unsuccessful so Carolyn decided to write a book based on her own experiences. She has a strong interest in poetry and felt presenting her memoir in “verse format” would be a new and interesting way to get her story written. Carolyn says “I know MS is an unknown thing to many and I am eager to assist others to know more”. Carolyn’s award is a print run of one hundred copies of her memoir and she will donate $2 of every copy sold, back to the MS Society.
Daniel has been awarded hand controls for his car, making it possible for him to get back behind the wheel and give him back his independence. Daniel says “This will have such a positive impact on my life. Not only will I be able to return to my studies, but a quick trip to the shops will no longer be an all day process. I feel I will regain a huge sense of independence and some normalcy to my life again”.
Due to the unpredictability of his symptoms David found more sense in working from home, in conditions that suited him better. David is keen to maintain his skills and finds it therapeutic to have purpose in his life. He now works with clients such as Rotary Clubs as well as the Glenelg Historical Society and has just signed on as a volunteer with the MS Society, offering to assist in the marketing department. David has been awarded Adobe Creative Suite software, which will allow him to be more productive and continue volunteering his advertising and graphic design skills.
Janette Bigham Janette was diagnosed with relapsing remitting MS 18 years ago, but on reflection she knew it was there years before. In addition to her MS diagnosis, she is facing her third round of breast surgery and also suffers from celiac disease. She could be forgiven for feeling like the world is against her, but Janette 14 MS Network Magazine 07 | 2013
MS Choice Awards
is eternally positive, something she says that requires ongoing attention! Janette’s motto for 2013 is “life is what you make it”. Keen to make 2013 a year to remember, Janette has been planning her “dream” caravan trip to Queensland with her carer to visit her brother who is getting married. Janette says “caravanning is how I switch off a bit, even though I can’t leave my illness behind the change of scenery is usually enough to enable me to take a break. Janette has been awarded $1,000 towards fuel for her trip.
Jeni Andrew Jeni like many others has found recent times financially tough. As she is largely immobile she spends much of her time reading and gains great pleasure from this. Her MS has affected her eyesight and she is unable to read anything but large print, her right eye has only partial sight. The big print books available to her are heavy and the choice is limited. Jeni has been awarded a Kindle Paperwhite 3G eBook reader which includes downloads to suit her needs. The eBook reader provides adjustable font sizes and backlighting and she will have access to titles not available in physical large print. Jeni feels this will greatly enhance the ease and variety of her reading pleasure.
Joe Macri Joe has been described by his Help at Home Nurse as an amazing man with a gentle, happy nature despite the adversity of living with MS. After being diagnosed seven years ago he returned to Adelaide from Sydney to be closer to his family. Joe has two services daily to assist with transfers in and out of bed and at other times during the day transfers independently. A regular user of our Therafit Home Hire program gives Joe access to ongoing exercise which assists him to remain as independent as possible. Joe has been awarded a Therafit pedal machine of his own so that he will no longer be limited to the 4-week hiring period.
Lee Spencer Lee lives with her 18 year old intellectually disabled son, Chris. Due to her MS, Lee is greatly affected by the heat and at the end of last year Lee moved out of her bedroom into the lounge room, the only place with air conditioning. This set up leaves Lee with very little privacy from carers and other visitors and both she and Chris are discomforted by an arrangement which is neither appropriate nor sustainable. Lee has been awarded an air conditioner for her bedroom and was thrilled to know she will be able to move out of her lounge room, saying it will make a big difference to her life.
Madeleine Heikkinen Madeleine lives in public housing with her son and daughter and relies heavily on her 25 year old son for help around the house. Diagnosed with in 1998, Madeleine’s health has meant she hasn’t been able to participate in paid employment for quite some time. She has always struggled financially on a pension and found it extremely difficult to save money. Her fatigue is often a great struggle and she also suffers from type 2 Diabetes, requiring insulin twice per day. Madeleine has been awarded reading glasses and a new washing machine as her 10 year old machine is beyond the point of repair. She says hand washing gets very interesting when you have sheets and quilt covers to wash!
Mahile Kangarloo Mahile came to Australia by boat as a refugee from Iran. She spent 10 months in a detention centre and it was during this time that she became unwell. Nine months after leaving the camp Mahile was diagnosed with MS. Within Mahile’s family and culture there would ordinarily be a great deal of support but as she is a long way from home it makes this very difficult. Mahile has been awarded a microwave oven and fridge as both of these items were given to her second hand after moving from the camp, but have since broken down. New to Australia she does not qualify for assistance from agencies, these basic essentials will provide great comfort. 07 | 2013 MS Network Magazine 15
MS Choice Awards
MS Choice Awards continued Pam O’Sullivan
Sue Crosby
Pam suffered a relapse of MS in February this year and after experiencing difficulty with mobility in her legs she decided it was unsafe to continue driving.
Sue lives at home with her two sons and finds herself cooking a lot! However, because of a recent back injury, the movement around the kitchen is difficult. Sue loves cooking but needs a safer environment to continue with her passion.
This decision has impacted greatly on her independence and ability to participate in the community. Pam has two sons who work and study and don’t always have the flexibility to drive her around. Pam has been awarded hand controls for her car which will allow her to drive safely. Pam says this is incredibly important as she doesn’t feel comfortable relying on others and that it will give her a great sense of independence.
Wendy Wilson Wendy is new to horse-riding and describes her pony as resembling the Thelwell cartoon. “Think overweight little pony, all four feet off the ground at once, neck outstretched, nostrils flaring, totally ignorant of the rider bouncing along his back.” However, despite being only 6 years old, Wendy describes her pony as her friend, her confidant and little bit of freedom. Wendy didn’t let the diagnosis of MS stop her riding, she just made some minor adjustments and has since bought some rubber reigns and good gloves to allow her to hold on even when her hands don’t want to grip. 16 MS Network Magazine 07 | 2013
Wendy was awarded a stock saddle which provides better contact with the horse, keeps her upright and keeps her legs in the correct position, making riding her fat little pony much safer.
Samantha Spence Samantha was a dental nurse prior to suffering an MS attack 6 years ago which left her paralysed on her right side. It took her 9 months to learn to walk again and she has still not fully recovered. Samantha has also suffered from seizures over the last 18 months resulting in a deterioration of the use of her hand and arm. They tire quickly, even after little use. She cannot use her standard laptop anymore which has restricted her ability to communicate and access the social networks she participated in prior to her health failing. Samantha has been awarded a touch screen laptop. With limited fine motor skills this will greatly enhance her ability to use everyday technology.
With her son looking to leave home next year to continue his education at University, Sue hopes to remain as independent as possible as her support networks decrease. Sue has been awarded a new wall oven, which will reduce her need to continually bend down to floor level to lift out hot dishes. She will also receive a new cook top and both the oven and the cook top will be fitted and modified to suit her specific needs.
Silvia Mignone Silvia was diagnosed with MS in May 2010, just after her 20th birthday. She says it was a big shock and took a long while to get used to, especially the fatigue. She used to surf the net looking for information about MS and found an amazing story about an American Doctor who also had Multiple Sclerosis. The story explained how Dr. Terry Wahls could improve her symptoms through eating healthy organic foods, exercising and meditation.
Page heading 1 | Page heading 2 | Page MSheading Choice Awards 3 | etc
The story inspired Silvia to follow suit and after 3 months she noticed a big change, she had a lot more energy, a clearer mind, less migraines and she couldn’t believe how cutting out dairy, gluten and sugar would change her life so much! She found a new passion for food and healthy living and is now in the process of setting up her own cake and sweets business, which will function using all of the knowledge she has gained. Silvia has been awarded sessions with a graphic artist who will design a brochure for her so she can start promoting her new business.
Tan Alcock Tan was diagnosed with MS in 1994 and now at the age of 46, lives in a nursing home in Adelaide. Mark, Tan’s husband, was her primary carer until he became unwell and had to go into hospital and was no longer able to provide the level of care Tan required.
Ted McWatters Ted was diagnosed with MS in 1999 and now relies on an electric wheelchair. He suffers from weakness in his arms and hands, which means he has very limited capacity to write or type and struggles with both tasks. Ted lives on a 7 acre property in Williamstown. His wife and two children no longer live there and he requires regular care to remain as independent as possible in his home. Ted says “I am primarily housebound and would greatly benefit from a computer to keep in contact with others and keep informed on current affairs”. Ted has been awarded a laptop and voice activation software, which he says will allow him to have regular
face to face Skype contact with his son and daughter, do the grocery shopping and ensure his safety and wellbeing when his carers are not available.
Zvonko Volar Zvonko has been an active member of the MS Society for many years. A regular user of our Therafit Home Hire Program after the machine was introduced to him in 2011, Zvonko was eager to learn exercises he could perform at home to improve the strength in his arms and legs. Maintaining the strength in Zvonko’s legs will ensure that he is able to continue transferring independently and safely. Both Zvonko and his wife Katarina don’t drive so having an exercise option within their home is an integral part of sustaining his exercise program. Zvonko has been awarded a Therafit Machine.
She was denied a place in Jamestown nursing home, a couple hundred metres from her family home where Mark still lives as she was under the age of 65 and didn’t qualify. Confined to a wheelchair Tan does not get any exercise and suffers greatly from weakness in her hands, arms, legs and feet. Tan has been awarded a Therafit Pedal Machine which will greatly assist in strengthening her limbs and have a positive impact on her mental health.
07 | 2013 MS Network Magazine 17
Considerations when starting a family
Considerations when starting a family Gary Fulcher, MS Australia, Sydney, Australia Thinking ahead is an important part of deciding to become parents, particularly for people with MS. This article provides information about some of the issues that most concern people with MS about starting a family. Relationships MS can bring changes that may strain even the strongest relationships, including experiencing the trauma and emotional distress of a diagnosis of MS. MS-related symptoms and financial difficulties can add to the pressure. As all couples planning a family should be emotionally ready to take this step, it is important to seek help if these issues are or become a problem.
Financial concern Certain aspects of the disease may affect a person’s ability to work. The partner may also need to take time off work to provide care for the person with MS and/or their child. It is necessary to check what supports exist locally to help couples maintain employment or gain financial assistance.
Ability to look after children in the future Because MS is so unpredictable, there is no straightforward answer to whether a person with MS will have the ability to look after a child in the future. Generally, many people with MS experience some level of disability within 10 years of the disease onset; however, most maintain physical independence for 25 years and more after diagnosis. 18 MS Network Magazine 07 | 2013
Role changes within the family
Breastfeeding
Over the course of MS, a shift in roles may be necessary and this can occur unexpectedly. The person with MS can go from being the main contributor in the household to needing care. There may be times when a partner may need to take on the role of caregiver and parent, and this can cause stress for the family.
Breastfeeding does not increase relapse rate or lead to a loss of ability. In fact, exclusive breastfeeding may even have a protective effect for the mother against MS activity.
Mood and emotions For some people, worries about having or coping with a child can make anxiety or depression worse, while for others the worry of not having a family causes distress. For those with children, parenting can create stress and make managing MS harder. Each person is different, so it is important for couples to consider their feelings about how they will cope with their decision to have a child or not.
Pregnancy and ms Pregnancy does not affect the longterm course of the disease. Many women with MS have fewer relapses during pregnancy, especially during the second and third trimester. This is thought to be caused by pregnancy hormones dampening the activity of the immune system. However, relapses can still occur and can be a challenge which may need to be treated. Mothers are more likely to experience a relapse in the months after the birth. Research shows that pregnancy and delivery, epidurals or after-birth relapses do not have any impact on a woman’s level of ability in the long-term.
Mothers with more active MS often choose not to breastfeed and return to treatment immediately. Bottle feeding also allows both parents to share night feeding, which may help when fatigue is an issue. Neurologist and other health care providers can give individually tailored advice.
Does MS affect fertility? Unfortunately, little research is available about fertility in MS. On the basis of the existing evidence it can be concluded that, for women, MS does not generally affect fertility. It is important, however, to be well-informed about any effects medications for MS on fertility. Fertility treatment, specifically hormone stimulation for pregnancy [for example, IVF] has been shown to increase relapse rates in a small group of women with MS. Seek advice from neurologists and advising gynaecologists when considering this approach. For men, MS may affect fertility. It has been suggested that endocrine abnormalities may impair sex hormone levels. This area of research must be studied further in order to understand the mechanisms causing the malfunction. Further, about two thirds of men with MS experience erectile dysfunction, often caused by demyelination. Men with MS should seek medical advice about fertility issues and timing if they want to start a family.
Considerations when starting a family
What about my medication before and during pregnancy? For men, the main issue about medications is whether they affect fertility and should be avoided or reduced if couples are trying to conceive. The very sparse research suggests that none of the standard disease modifying drugs have significant effects on male fertility. Some more radical drug treatments, such as cyclophosphamide, do have impacts on fertility for both genders and it is always worth seeking medical advice when planning to start or extend a family. For women, a neurologist may recommend stopping medication 1-3 months before trying to conceive and not using medication during pregnancy or while breastfeeding. Some medications for MS have been detected in breast milk and, therefore, speaking to a neurologist about breastfeeding before recommencing medications for MS is recommended. Interferon beta-1a or 1b and glatiramer acetate: There is not
enough information about the full effects of these medications on the baby. Therefore, continued use in pregnancy is not recommended.
The likelihood of a child developing MS is indicated in the following statistics:
Cladribine, fingolimod and natalizumab: There are no studies involving this drug and pregnant women.
Out of 1,000 people
% risk
1 person on average will develop MS in their lifetime
0.1
Steroids [such as prednisone and methylprednisolone]: These drugs have been taken by a large number of pregnant women without causing direct or indirect harmful effects on the foetus. However, as a precaution, these drugs should be avoided during pregnancy a d breastfeeding unless your neurologist specifically advises otherwise.
30–50 people will develop MS if one parent has MS*
3–5
120 people if both parents have MS
12
Will MS affect my baby during pregnancy? Having MS does not increase the chance of having a miscarriage or still-born or increase the number of infant deaths or foetal abnormalities. Therefore, Ms itself does not pose a risk to the mother or child.
880 people will NOT get MS even if both parents have MS
-88
*The risk is higher if the mother is the parent with MS.
A full version of this article appears on our website at www.msif.org/startingafamily
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 07 | 2013 MS Network Magazine 19
Peer support update
Peer support update The Peer Support program continues to connect people with MS to each other to provide opportunities to meet and discuss your MS with others experiencing similar issues. There are a number of programs and groups currently in action – please read on for more information! 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
Hard Yakkas (Elizabeth)
2nd & 4th Wednesday each month
Venue to be confirmed
Tallia Coulter 0403 766 157
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
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
Eastern Suburbs & Foothills
3rd Thursday each month
Burnside Community Centre
Paula Hardy (08) 8379 8220
Port Lincoln
Every 2nd Tuesday
Group member’s homes
Rick Cunningham 0427 999 029 rick.cunningham@ sapowernetworks.com.au Pamela Price 0427 824 145 pswafferprice@hotmail.com
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
Western Suburbs
Last Friday each month
Various venues
Irma Ferro 0439 801 849
Parents & Kids
All areas
Irma Ferro 0439 801 849
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.
Overcoming Multiple Sclerosis Peer Support Group If you are on the Overcoming Multiple Sclerosis program or would like to learn more about the program and are interested in joining a Peer Support group please contact Pam Schartner on (08) 8331 9360 or email pschartn@iinet net.au 20 MS Network Magazine 07 | 2013
Peer support update
Online support
Mentoring
135 members and counting!
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 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. You can find it at www.facebook.com/ groups/MySocietySANT/ – just request to be a member.
07 | 2013 MS Network Magazine 21
Workplace Solutions
Workplace Solutions Performing well with little support
number of trips needed between the classroom and the admin block.
My name is Pat Allmand and I’m a language teacher and Coordinator of Languages at St Aloysius College.
In 2011, I again received assistance from Multiple Solutions, this time it was mainly counselling and support with matters related to my disability
I have been a teacher for over 30 years and in October 2002 I was diagnosed with Relapsing Remitting MS. I managed for a number of years without workplace support but as the illness steadily progresses I find that I have needed to access workplace support.
Then, when planning began for the 2013 school year, I raised concerns about my balance and mobility when moving around the classroom and I made the decision to involve Multiple Solutions once again.
In order to keep working as a teacher, not only has my workplace made some generous adjustments, but I am also a recipient of the long term and varied support that has been provided by Multiple Solutions. After the diagnosis of MS in 2002, I continued in my role, but as some of my symptoms and my fatigue increased I was able to negotiate with my employer to reduce my hours of work and modify some work arrangements. In 2007, I contacted Multiple Solutions as I was finding it hard to move safely around the large grounds of the college and I needed additional cooling for my classroom. With the help of my MS case manager and an OT, and with funding from DEEWR, I was provided with a scooter for moving around the grounds, an air conditioner for my classroom and a computer and printer in my classroom. I also received support from the college with the provision of an easily accessible car park and changes to admin procedures to reduce the 22 MS Network Magazine 07 | 2013
After some negotiation, it was decided that Multiple Solutions would fund an existing ESO to work with me during my language lessons, and to ‘be my legs’ in the classroom. This arrangement has been well received by all, I can continue with the most energising part of my role which is classroom teaching, the students have ‘extra’ attention and the ESO is even learning to speak Italian! Multiple Solutions have also funded a walker
‘Working with Multiple Solutions to support Pat in continuing her work as a teacher and leader of learning at Saint Aloysius College has been a very positive experience. Their support has enabled Pat to continue her enthusiastic engagement with students in the classroom.’ Paddy McEvoy Principal St Aloysius College so that I can move safely around the classroom when needed. My work gives me enormous satisfaction, and while I believe I still have something worthwhile to contribute to the St Aloysius College community I intend to keep working for as long as my health permits. I am very grateful for the support I have received from Multiple Solutions over recent years because their support has been instrumental in extending my working life and keeping me in the workplace. Footnote: Pat is an inspirational role model to her colleagues and students – not just of determination, but showing how to change the way you do things so that you can continue in what you love and excel at.
Workplace Solutions
Support for workers and the self-employed Does your health impact your work? Does your work affect your health? Multiple Solutions can you help you manage both by:
n
n
Funding workplace aids, equipment or modifications Helping you develop strategies to continue working successfully
Reducing stress and fatigue at work helps to also increase the energy you have for family and home.
Contact Workplace Solutions staff to ask about this free workplace support: North (08) 8203 6600 South (08) 8198 1400 Email: wpsolutions@ms.asn.au
07 | 2013 MS Network Magazine 23
Client stories
Client stories injuries, so it was all a bit strange when I was diagnosed with MS. The company eventually disbanded and through a grant from Arts SA, I was able to move to Europe. I remounted a work for Meryl in Portugal and also worked on an Andrew Lloyd Webber musical – I had an apartment in Covent Garden for 3 months. It was all very exciting, but hard work and stressful - it was very high pressure.
Michelle Ryan I grew up in Townsville in Queensland and danced from a young age. My focus was mainly ballet until I studied dance at Queensland University of Technology (QUT). In 1993, when I was 21, I moved to Adelaide to dance. I got a job performing with Meryl Tankard’s Australian Dance Theatre company. This was the main part of my performing career. It was a high-profile dance company and we performed all over Australia including the Sydney Opera House. We also toured internationally performing in New York, Paris, London and Tokyo to name just a few places. It was pretty amazing. We were not paid outrageously, but there were a lot of perks, especially the travel. Looking back at this time there were no signs of what was to come. I remember I used to get slightly cold feet which I blamed on bad circulation, but I had always been lucky with no
24 MS Network Magazine 07 | 2013
Shortly after this when I was in Brussels, I began noticing something wasn’t quite right. I remember standing in ballet class and I couldn’t feel my calf muscles and when I put my head down, my fingers would tingle. I saw a physio at first but they didn’t want to treat me. They said to me, “You could have anything from a pinched nerve to MS”, and something inside of me just thought ‘Oh no’. I didn’t even know what MS was; I had to go on the internet to look it up. My boyfriend at the time, who was also a dancer, was in Berlin so I flew there where I saw a neurologist who did a MRI scan. It was all a bit scary because everything was in German. Hearing the doctors speaking only in German to each other about my case was really scary. I was sent to hospital for a lumbar puncture. Because I was over there on holiday travel insurance they didn’t want to admit me. I remember they said, “You have a choice, you can have the top person do the lumbar puncture, or the cheaper trainee doctor because if the health insurance doesn’t pay, then you have to pay.” I asked if we could go in the middle!
‘It was a highprofile dance company and we performed all over Australia including the Sydney Opera House. We also toured internationally performing in New York, Paris, London and Tokyo to name just a few places.’ Thankfully I had wonderful support network and some of my fellow dancers flew over from Switzerland to support me through my diagnosis. I am still working with these two people today. I had to give up dancing straight away because although I looked ‘normal’, when I jumped I couldn’t feel the ground when I landed which made it unsafe. It felt like everything had been stripped away from me. I just had this really high profile job in London and Meryl had this great gig in New York for Tiffany’s lined up for me, I was in love, it all seemed great! Then, in the space of a couple of days, I had my job and career taken away from me, but worse, my identity. I was a dancer. That was a really big thing and I remember being really ashamed that my body had let me down.
Client stories
I flew home and remember seeing people I knew at the airport. I went and hid in the toilet because I didn’t want them to see me. I didn’t want to have to explain why I was back. I spent the first three months I was back on a big Kombi trip around Australia with my boyfriend trying to relax, I eventually returned to QLD and enrolled in a naturopathy course for the next 6 months. I was about to go into an exam for this course when I completely lost feeling down one arm. That was the first time anything had happened since I was diagnosed so it was quite freaky. That was in June. By August I had a walking stick, and then by November I was in a wheelchair for about 3 months. At the time I thought, if this is how it’s going to do go, I’m doomed, what am I going to do?
‘Then, in the space of a couple of days, I had my job and career taken away from me, but worse, my identity. I was a dancer.’ I avoided going to the theatre for a few years because I would get too upset, but slowly I got involved again and became a choreographer’s assistant. I realised that I still had a lot of knowledge I could use in the industry. It was confronting for me at first as I didn’t fit in how I’d known it, it is such a body-beautiful industry.
We set up a dance group in Brisbane, before moving to Townsville to run a company up there for 5 years. I was the rehearsal director up there, and made a dance film called ‘Nerve Endings’. This was the first time I’d gone back into performing myself. It was a lovely project. It was small and really cathartic for me.
‘We set up a dance group in Brisbane, before moving to Townsville to run a company up there for 5 years.’ The film is actually based on MS, although I don’t want audiences to know that straight away. Those who are familiar with the disease will understand the meanings behind some of the scenes but it’s not until the end that you see that I have problems with mobility. I saturated the film in colour as I felt the colour had been drained from my life. Towards the end of my time in Townsville, my relationship broke down. I had been in the arts industry for nearly 20 years, so I decided to take a break. An opportunity arose in Brisbane to work with national disability services. I decided to take it as I wanted to do something good for people with disability. Around this time I came over to the Adelaide festival and met up with a woman called Gaelle Mellis.
She is quite a disability advocate in Adelaide and talked about a show she was doing for performers with a disability. She asked me to be involved and I agreed. It was a great show, we performed in the Vitalstatistix theatre company premises at Pt Adelaide. Everything there was accessible and we had an Auslan interpreter as a part of the show. The show was called ‘Take up thy bed and walk’. It challenged people’s perceptions about what disability is. I found it to be an empowering show. While I was in Adelaide a job at Restless Dance Theatre was advertised and it felt like it was the perfect combination of my experience with dance and my growing involvement with the disability community.. This is the only youth disability dance company that is in Australia. It’s a unique and special position to have. Restless Dance Theatre is Australia’s leading dance company working with young disabled and non disabled people to create dance theatre and run workshop programs. Our classes are mainly for 16 to 26 year olds, although we also have a program called ‘Growth Spurt’ running for children aged 0 to 2 years old. The students I work with are so honest – you ask a question, they will give you a completely honest answer, it’s refreshing! Everyone in the room is equal, and it’s wonderful to see the care they have for each other. For more information about the Restless Dance Theatre visit www.restlessdance.org
07 | 2013 MS Network Magazine 25
Client stories
Client stories continued I found I loved running. I was still studying at the time and found it therapeutic and a good stress reliever. I could think about assignments that I was doing – you get in the zone. I was still running 8 to 10 km 3 times a week 15 years ago – then I started falling over. I went to a sports clinic and they suggested I go back to my neurologist. He had diagnosed me 20 years before, but I hadn’t had been back since as I hadn’t had any problems. He ordered an MRI and it showed lesions in the brain and spine. Running is one of the things really miss.
Jan Willis I was diagnosed with Primary Progressive MS (PPMS) 35 years ago. It started with numbness in my hands and feet. With PPMS you don’t have relapses so this has never gone away. I now also have balance problems, but this only came about 15 years ago. When I was first diagnosed, it wasn’t affecting my life, I had minimal symptoms – just the numbness, so I went on with my life as normal. I had always been athletic, I had my gliding licence, I went to the gym, and sailed competitively in my own yacht for many years but I wanted to do something more, so I tried running. I was hesitant at first; I didn’t think I could even run around the corner! Within 18 months of starting my training and 5 years after I was first diagnosed, I had run my first marathon! I ran three marathons all around the city of Adelaide and a number of half marathons over the years.
26 MS Network Magazine 07 | 2013
‘I ran three marathons all around the city of Adelaide and a number of half marathons over the years. I found I loved running.’ The neurologist told me that because I’ve been so active and I am still reasonably active, my MS hasn’t progressed as much as it could have. I do a one hour Pilates class once a week, I ride 5km on an exercise bike as often as I can, and I still walk with my husband David about 3km, two to three times a week with a walker. My neurologist thinks it’s keeping mobile that has kept me as well as I am. But I know with some people with MS this is just not possible. All I can do is keep as active as I can for as long as I can – you’ve got to do your best. Focus on what you can do, not what you can’t do.
Along with keeping my body healthy, I have always tried to keep an active mind. I was a bookkeeper for most of my life, but when I reached 40 I decided I wanted some formal qualifications. I began with my Associate Diploma in accounting at TAFE. I was happy to leave it there, but David, who was a lecturer there, encouraged me to do my Advanced Diploma. After TAFE, I never thought I’d get my Masters Degree but I was a member of the Institute of Public Accountants (IPA) and they hold a degree course that you can do online through UNE University in Armidale – so I gave it a go. I had to do a pre masters course and obtain credits in every subject to go into the masters course – which I did! Having David around was a huge help, but I was the one who sat the exams! I studied over 4 years and got my Masters degree at 57! I didn’t do it to further my career; I did it for myself as a personal achievement. We flew to Armidale in NSW, for the graduation ceremony, which was great.
Client stories
‘To lose my independence would have been terrible – I would recommend this to anyone who had any qualms about driving.’
It was a warm day and I had concerns about walking up to the podium coupled with waiting in robes for 1.5 hours – I didn’t want to fall over as I walked up to the stage. However, I made it up to collect my degree with no problem. Eventually I started to have a problem with dexterity, writing and controlling the mouse on the computer so I decided to give up working. I do a little bit of accounting work from home, but we have been enjoying a lot of travel now that we’re both retired. We have gone on a number of tours over the years, but have decided cruises are the way to go as these are easier for me. My latest adventure has been learning how to use hand controls in my car. We bought a new Mazda2 a few years ago. I was having trouble driving the car and without realising it I was losing sensation in my right foot. I came home from the city one day and as I was putting the car in the garage I put my foot on the accelerator instead of the brake. You don’t have to have MS to make this mistake – but I did. The lack of feeling in my foot made it difficult for me to feel the difference
between the accelerator and brake. The air bags exploded and I wrote the car off. It took the accident to make me realise I had a problem driving. Thankfully it happened in the driveway and I didn’t hit another car. I went to see my new neurologist and she suggested that I go and see Merrilyn from the MS Society, who runs the driving program. I went for a 2.5 hour driver assessment and she was excellent. I recommend her to anyone who starts to find they have difficulties with their feet when driving. I was assigned an excellent instructor, Bill, who had over 50 years experience. He specialises in disabled driving and was very empathetic with me as his wife has MS. I had about 15 lessons to teach me how to use the hand controls. People think it’s hard to drive with your hands, but the brain converts, I don’t even go for the accelerator with my feet anymore. I lost my confidence after the accident but the driving lessons helped me to get that back and it was also a welcome refresher course on driving. I then had to pass a driving test using hand controls.
We ended up buying a Honda Jazz and got the hand controls installed. The modifications costed $1,300 for the standard model and we also had installed an indicator lever on the hand controls as an extra feature, so this bumped the cost up to $2,800. David can still drive the car normally as well, the hand controls are easy to convert. To lose my independence would have been terrible – I would recommend this to anyone who had any qualms about driving. My MS journey has taught me that despite all the hurdles this disease can throw up there are always ways of overcoming them or of reducing their impact. I am aware that there are many MS patients who are worse off than I am, however, any small positive achievements are always worth considering.
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.
07 | 2013 MS Network Magazine 27
Page heading 1 | Page heading 2 | Page heading 3 | etc
Main heading
T EAM E L IL V D O O T HE W
ALLICIA
28 MS Network Magazine 07 | 2013
Page heading 1 | Page heading 2 | Page heading 3 | etc
Main heading
MARK & JIM
07 | 2013 MS Network Magazine 29
Kiss Goodbye to MS
Kiss Goodbye to MS continued Did you help Kiss Goodbye to MS? Throughout the month of May, the MS Society and our amazing supporters took part in the Kiss Goodbye to MS campaign which saw people wearing, daring and sharing all things RED. The goal was simple – to raise funds and increase awareness about Multiple Sclerosis. Cocktail parties, sausage sizzles, country music festivals, cup cake stalls and ‘wear red’ casual days were just a few of the fundraisers that occurred during May to support this fantastic initiative. We’ve featured some of the great stories on the following pages. A big thank you to all our community fundraisers and volunteers who were involved in making this year’s campaign such a huge success. The time and energy you invested in Kiss Goodbye to MS is very much appreciated!
Kiss Goodbye to MS Cocktail Party By Norelle Branford About two months ago I got together with my friends Chanel and Dani with the idea of holding a cocktail party. We hoped for a sell out evening and thanks to the support of family, friends and everyone who bought tickets, we were able to achieve this goal. There was a mix of friends and family and others who came because they all knew someone who suffers from MS or they have MS themselves. I decided to hold this fundraiser because of my dad. About 10 years ago dad told my brother and I that he had MS. He hid the disease from us until he was starting to lose function in his legs. His diagnosis was primary progressive, one of the more severe types of MS. During the following year my dad lost the ability to walk and as the years progressed he became bedbound with limited movement in one arm, slurred speech and struggles with depression. His condition has had a strong effect on the family and friends. For me the strong healthy dad that I grew up with
30 MS Network Magazine 07 | 2013
couldn’t walk me down the aisle when I got married and he will never be able to hold his grandchildren. I had to become his guardian at 28 making life decisions on his behalf. Every couple of months I get a phone call asking about the resuscitation plan for my dad’s life. As a daughter a decision I never thought would be in my hands. But, on a positive note, over the years I can slowly see my dad rising out of his depression due to the care and equipment he has received from the MS Society. We were lucky enough to get him a place in a Disability SA unit which has meant so much to him. Day to day equipment is supplied along with 24 hour care. This is one of the reasons I wanted to hold the fundraiser, all the money raised goes towards providing support and services for people with MS and most importantly to help find a cure. We held the cocktail party at the Caledonian Inn in North Adelaide and the night was a huge success. We have managed to raise over $7,000 and we plan to be back bigger and better next year! You can see photos from the evening http://davemckayphotography. pass.us/msevent/
Kiss Goodbye to MS
What do cupcakes, red lips and a country town have in common? By Purdie Barr I’m a country girl through and through. For almost all of my 35 years, I’ve called Balaklava home. I thought I knew everything there was to know about country living. But it wasn’t until last Wednesday when I experienced firsthand, just how much heart a country community can have. My mother-in-law passed away 12 months ago after a brave 25-year journey with Multiple Sclerosis. We watched her slowly deteriorate and her quality of life cruelly being snatched away. It was heart breaking. Wanting to do something in her honour, I organised a fundraiser in my local town of Balaklava. My wonderful team of helpers and I ran a cupcake stall, coinciding with the national “Kiss Goodbye to MS” campaign held during May. And what a response we got! To my disbelief, we pre-sold almost 40 dozen to local businesses, schools and workplaces and sold another 20 dozen on the stall. To come home with only three cupcakes, from almost 700 was quite simply amazing. The stall was a sea of red and white, with cupcakes beautifully decorated with gorgeous red lips, red stars, jaffas and red sprinkles. Some people even said it was the most professional ‘trading table’ they’d ever seen! We also sold show bags and raffle tickets and held a ‘guess the number of red and white lollies in the jar competition’.
‘Days like last Wednesday is what living in a country community is all about.’
Days like last Wednesday is what living
More than $4,000 was raised from cupcakes and show bags alone. I am forever grateful to each and every person and business that helped and supported in any way. It was a total team effort.
make someone’s life with MS easier
in a country community is all about. I went to bed that night feeling incredibly blessed and humbled. But most of all, I was full of pride. Proud that our little community helped and edged that bit closer to a cure. Well done Balaklava – for a small town, you have a massive heart! 07 | 2013 MS Network Magazine 31
Kiss Goodbye to MS
Kiss Goodbye to MS continued Year 12 Research Project into MS By Jordana McCallum The aim of my Year 12 Research Project was to find out whether one person could make a difference in the fight against Multiple Sclerosis. As part of my investigation, I have been fundraising and raising awareness as part of the Kiss Goodbye to MS campaign. From the very beginning, when my dad was diagnosed with Multiple Sclerosis (MS), I strived to help not only him, but other people who are also suffering from this disease. Before dad’s diagnosis, I had never really heard of MS. Witnessing firsthand how it affects not only the person living with MS, but their family too, persuaded me to take the opportunity to use my school Research Project outcome as my chance to learn about the disease that has forever changed our family and to help make a difference in the fight against MS. For the last two years, a lot of people have asked me many questions about dad’s disease because they have no clue as to what Multiple Sclerosis is. It has been one of my main goals to change that. The fundraising has been really successful, and I have been astounded at how much money I have raised. It is not only a great feeling to raise money for research for MS, but to raise awareness of the disease that means so much to me. In the beginning of my fundraising I was interviewed by our local newspaper. I was shocked to find my article had made the front page. 32 MS Network Magazine 07 | 2013
The newspaper article was then shared through online newspapers around other states. This has definitely been one of the most successful ways of raising awareness. Social media websites have been a huge help towards spreading the word of what I am doing for my Research Project. My online fundraiser was shared via Facebook and Twitter, within 24 hours $1000 had been donated. I held two fundraising events; one being a casual clothes day at my school – Tumby Bay Area School where students came dressed in something starting with M or S with a gold coin donation – $530 was raised through this, and the second event being a trading table held outside of our local IGA - $780 was raised. I also organised through our netball teams to wear red ribbon and red lipstick while playing. At the start of May, I put donation tins around the community as a way to raise both awareness and money. I registered as an individual fundraiser on the Kiss Goodbye to MS website at the beginning of May. This has been my most successful way of raising money; raising $4,205, leaving me as the highest individual fundraiser for SA/NT. I received many generous donations from not only people that I know, but also complete strangers.
I believe my online fundraiser and the newspaper article were the major contributors to raising awareness. I received many emails with advice and encouragement from people not only in South Australia, but other states too. It became obvious that my achievements had great value to not only myself and my family, but other people as well. Through my efforts in my Research Project I have learnt how important it is to think positive.
Kiss Goodbye to MS
I believe my achievements throughout the Research Project have given my dad the ability to see positively that something can be done about the disease he is living with; given him hope that one day there will be a breakthrough in Multiple Sclerosis. Overall with my online fundraiser, the fundraising events that I organised and the donation tins, I have raised $6803.45. The amount of support I have received to raise this amount of money and awareness has been overwhelming. It is great to know that so many people want to help this cause. The support that we have received means more to my family and I than words can explain. I am currently in the process of organising an auction in our local community. I have been donated many goods from a range of organisations. I will be holding this auction sometime within the next two months.
‘In the beginning of my fundraising I was interviewed by our local newspaper. I was shocked to find my article had made the front page.’ Although I have done this through my school Research Project, I hope to continue raising awareness and funds for MS. It is such a great feeling to know I am helping someone so close to me, but also helping other people like him. If there is one thing that I wish for, it is to find a cure to help those like my dad who are suffering from this disease. I hope that the money I have raised will help towards finding a cure. 07 | 2013 MS Network Magazine 33
Kiss Goodbye to MS
Kiss Goodbye to MS continued The Alderson family takes a daily ride to Kiss Goodbye to MS As the Fundraising Development Co-ordinator for the MS Society, Kirsten Alderson is used to dedicating time and effort for those with MS. Kirsten and her family have gone one step further to raise awareness for MS through a daily bike ride during the month of May as a part of the “Kiss Goodbye to MS” campaign. For the second year running, Kirsten will ride with her husband and daughter along the Linear Park bike trail near her local suburb of Klemzig. “The three of us have mountain bikes, so we decided to ride every day in May to raise awareness for MS,” she said. The ride takes cues from the “Wear, Dare and Share” motto that drives the month-long campaign. “We wear our team MS shirts when we ride and we’re daring by riding after work in the evenings, and we share our adventure on social media” Kirsten said. Kirsten’s ride is also attracting the attention of the local community and she is always happy to answer questions while on the trail.
34 MS Network Magazine 07 | 2013
“It’s surprising how many people ask “What’s MS?” - but that’s why we’re there. We get to educate people and really spread the word,” she said. She is the first to admit that the weather has not been the kindest, but her and the family will take it in their stride for the cause. “It’s been cold – very cold. But it’s not something that stops us from riding because we realise that people with MS suffer from much more than cold weather every single day,” said Kirsten. Twitter has been used to highlight and encourage various events and stories related to MS and how people can get involved and for Kirsten the internet has been a key element of driving her and her family to ride every day. “When we rode for the first time last year we actually got promoted on the World MS Day blog which was really encouraging. People would spread the word through pictures – which is exactly what we wanted as a part of our ride,” she said. Not content with just two years of riding, Kirsten and her family aim to add a bit of unpredictability to their rides. A change of location is most definitely on the cards.
‘We wear our team MS shirts when we ride and we’re daring by riding after work in the evenings…’ “We want to do something a bit different with our ride next year. We’re going to raise money, and if we reach $5000, my husband will ride through Adelaide CBD wearing red lipstick and a red tutu,” she said. Having spent several years with the MS Society, Kirsten is aware of the need for more and more work being put into MS awareness. “I’m passionate about what I do here – it is about doing something that wasn’t for us, but about other people and what they face on a daily basis, If we can just change one person’s outlook on MS or encourage one person to do things they normally wouldn’t we’ve succeeded – MS is more than just two letters and we need to show people why.” And will Kirsten and her family keep riding after May is over? “Well, if it’s anything like last year – we’ll need a two week rest I’d say (laughs).”
Fundraising
07 | 2013 MS Network Magazine 35
07 | 2013 MS Network Magazine
Sue – 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
Darwin
Salisbury
P (08) 7002 6500 F (08) 7002 6599
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) 8256 3700 F (08) 8256 3749
P (08) 8948 5300 F (08) 8948 5344
Woodville Greenacres 19B Fosters Road Greenacres SA 5086
51 Woodville Road Woodville SA 5011 PO Box 16 Woodville SA 5011
P (08) 8360 0800 F (08) 8360 0899 P (08) 8345 8700 F (08) 8268 4224
Morphett Vale
www.facebook.com/MSSocietyofSANT www.twitter.com/MS_SA_NT
Unit 3 204 Main South Road Morphett Vale SA 5162 P (08) 8187 2100 F (08) 8187 2190
www.ms.asn.au | The magazine of the Multiple Sclerosis Society of SA & NT