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SEPTEMBER 2020
MS SOCIETY SA & NT
THE OFFICIAL SUPPORTER NEWSLET TER
FREE CALL 1800 812 311 ms.asn.au
O F M U LT I P L E S C L E R O S I S S O C I E T Y S A & N T
Empowering people to live well. Supporting research.
Your generosity is making Toni physically and mentally stronger. Toni thought it was strange when she couldn’t feel the towel against her back as she dried herself. Gradually the numbness spread until she couldn’t feel anything from the chest down to her toes. It felt like she was walking with pins in her feet. A few weeks later she was diagnosed with MS. She was scared. Scared about what the future might bring and how she would manage this condition with a young daughter still in primary school. Until she started talking to others living with MS.
Toni joined several online peer support groups so she could connect with people internationally, nationally and within South Australia who understood what she was going through. She really believes in the power of people with MS coming together to support each other. The MS Society hosts a private Facebook group for people living with MS in South Australia and Northern Territory to connect and share their experiences. There are over 380 people in this group. Thanks to you we also have 20 peer support groups that meet face-to-face providing an invaluable support system for people with MS.
TONI’S STRENGTH
“We share knowledge between each other. I think that’s really supportive and really helpful. It gives you a bit more security that you’re heading down the right road,” Toni says. Swelling in the arms and legs is a common symptom for Toni. She experiences muscle weakness and soreness. When she walks, she can feel off balance particularly on uneven ground, so she uses a walking stick to keep her stable. For years now, Toni has been doing regular exercise at the MS Society gym with our personal trainer, Roy. With your support we are able to offer a specialist gym for
people with MS. Our gym equipment and personal training sessions can be specifically tailored to people with mobility concerns. Toni says she has learnt so much about her body and has gained so much more confidence in the gym. She now knows that exercise doesn’t have to be rigorous, every little bit helps her to build strength and reduce the impact of her MS symptoms.
“At first, I never thought it was helping me but then when I stopped for a few months I definitely felt the difference. My mobility got stronger and my arms weren’t fatigued as quickly. I’m able to move longer, to do more things and feel a little bit
normal for a while when I am consistent with exercising,” Toni says.
She has seen a visible difference in the strength of her arms since she’s started with the gym. At work Toni had a portable extension attached to her work desk that gave her extra support for her arms when typing as they started to get fatigued. Toni says when she was first diagnosed, she couldn’t do that for long without a lot of pain. And now, thanks to the regular gym sessions, she doesn’t need it anymore! Thank you! You’re giving people like Toni access to services that reduce the impact of their symptoms and support them to live well with MS.
Welcome to your bi-annual supporter newsletter.
Note from the CEO
At the MS Society, our priority has always been to keep our clients safe and ensure that people with MS have access to the services they need anytime and anywhere. Despite the challenges the COVID-19 pandemic has presented over the past months, our team continues to deftly provide health and wellness support for our clients.
It is thanks to your generous support that we could rapidly respond to the needs of our MS community during such an uncertain time. Our MS nurses managed an increase in calls from clients and were able to continue to provide valuable support over the phone. They were actively calling our clients to check on their health and wellbeing, while ensuring that our MS community had access to the supplies and resources they needed during this time.
Our therapy and social support staff moved their support and advocacy from face to face appointments to teleconferencing so people with MS could still access essential services. While our group exercise sessions temporarily closed, we were able to introduce some great virtual classes for our MS community to safely participate from home.
Your donations helped us to deliver new and innovative services to people living with MS during the COVID-19 pandemic, including our new virtual exercise and yoga classes. As an organisation that relies on delivering face-to-face services to our clients, your support helped to ensure we could still be there for people with MS at a time when they needed us most.
Not only did our usual gym and hydrotherapy classes have the obvious physical benefits to help people to manage their MS symptoms, but they were a great way for people with MS to connect with others on a regular basis.
During a time when many of us were feeling socially isolated, this sense of disconnect from the outside world was difficult for many of our clients. An added bonus to virtual classes means that people from anywhere in South Australia and Northern Territory could connect with our specialist MS physiotherapists. These new classes meant that we could reach people who have never been able to use our services before, like Elaine.
Christine Hahn Interim Chief Executive Officer
We could not possibly provide these services without your support.
You’re changing the face of MS services in SA & NT
Our MS physiotherapists ran three exercise classes per week using Zoom, and we had experienced yoga instructors running a weekly yoga program. All exercises could be done standing or in a chair for people with mobility and balance concerns.
With people like you by our side, we will continue to meet our commitment to provide quality services to people living with MS.
“These classes were a real-life saver in this time of lockdown. It’s such a great idea and I’m so glad they are continuing.
This is such a marvellous way for people who haven’t connected with the MS Society yet to get involved,” Elaine says. “Finding the self-motivation to exercise on your own is difficult. The classes keep me moving and my family think it’s great that I can exercise at home on a regular basis. I feel like I’ve had a really good workout afterwards. It really gets the heart rate going.” While our face-to-face gym and hydrotherapy classes have resumed as normal, with your support we will continue to offer these new virtual exercise and yoga classes five days a week to reach more people living with MS.
You and MS Society SA & NT: supporting research With your generous support, we were able to contribute $725,000 to MS research in 2020! Thank you for making this possible! There is currently no known cause or cure for multiple sclerosis, and while research has taken many strides in the past few decades to develop treatments for symptoms and disease progression, there is still more that needs to be done.
Your gift will help MS Research Australia to fund essential Australian studies researching improved treatments, a cause and a cure for MS. For MS research news and updates, visit MS Research Australia’s website: www.msra.org.au.
A special day for families Families affected by MS shared a very special day together at Adelaide Zoo, thanks to your support. Not only did our families get to spend some fun, quality time together at the zoo, they also learnt some great ways they can manage MS as a family and took home a very special memento. The Family Day provides an opportunity for kids who have a parent living with multiple sclerosis to spend quality time with their family, learn more about MS and bond with other kids who are sharing their journey. A diagnosis of multiple sclerosis is a major life-changing event for any parent. Every person’s experience with MS is different, and they can experience a range of different symptoms which may not only affect them but also those around them. While a child might know that their mum or dad has MS, they might not always understand why that means they can’t kick the football with them or play outside in the sun.
Families took part in a yoga session with an experienced yoga instructor, and a mindfulness session with our MS Nurse, June. Both sessions included practical ways the whole family could continue this practice at home. Both yoga and mindfulness have been shown to help reduce the effects of many MS symptoms including balance, fatigue and pain. Kids and parents formed special bonds with other families affected by MS over lunch and got the full Zoo experience including a Wild Show with a Zookeeper where they met and learnt about possums and quokkas.
Leave a lasting impact Leave a gift in your Will to the MS Society SA & NT and help us continue to give hope to thousands of people living with multiple sclerosis in South Australia and Northern Territory. If you have already remembered the MS Society in your Will or are considering doing so, we would appreciate you letting us know so we can thank you personally and plan for the future. Call (08) 7002 6500 or email bequest@ms.asn.au.
It was so heart-warming to watch the children create their own Build-aBear to take home as a keepsake. The bears all went through a heart ceremony where the kids decided on the traits their bear will have before it was sewn up. June then took the kids through a short session on positive affirmations, and the kids picked their own positive words to write on the bear’s t-shirt. Nicole brought her two-yearold daughter, Madi along to the Family Day and says they hope to continue to attend these events as Madi gets older.
“We had a fantastic day. Madi loved the Build-a-Bear and colouring in. The yoga was a great idea. I did a bit of yoga before I had Madi and it reminded me how much I would love to start doing classes again. The mindfulness was also a great, it’s definitely something we need to think about more. We also loved being able to go for a walk around the zoo looking at all the animals,” Nicole says. We had 19 families join us for our first Family Day. It booked out much quicker than we anticipated and was in huge demand. Your ongoing support will help to make sure everyone who needs it can go in 2021 and beyond.
GRANT’S TRIUMPH Many people with MS, like Grant, need access to funding so they can purchase therapy services, equipment and activities they need to help them live well. With your support, we have helped Grant and many others to access this vital funding so they can achieve goals they never thought possible. Often accessing these funding streams can be incredibly confusing and frustrating, and the people who desperately need funding are rejected because they don’t understand how to navigate the lengthy process.
You’re giving people the opportunity to reach their goals
Grant experienced firsthand how tricky these application processes can be, after two failed applications. As a photographer, taking pictures for magazines and newspapers, Grant was always carrying around heavy equipment. His symptoms of balance and walking issues made this part of the job harder and harder. Eventually he had to give up what he describes as the best job in the world. Just like many people with MS, Grant has good days and bad days with his walking and other symptoms.
He wants to make sure he can access the services he needs to support him on those bad days and if his condition was to progress. He also wants to continue to use services like physiotherapy, hydrotherapy and massage which help him to live well both physically and mentally.
He sent in his Access Request Form with a letter from his neurologist. There were massive delays and he waited months for an answer. The answer he finally got was not the answer he’d hoped for… he had been rejected. He applied again a second time and had the same outcome. Where was he going wrong?
When Grant’s neurologist suggested he apply for the National Disability Insurance Scheme (NDIS), he started the application process.
Despite receiving the same disappointing outcome, a second time, Grant refused to give up. He decided it was time to get some help. That’s when he re-connected with the MS Society and started working with our Wellbeing and Social Support Coordinator, Jessica.
“I thought I’d get some more help in filling out forms and some advice from the MS Society. Jessica helped me hugely fill out the form to apply for access to the NDIS,” Grant says. “The forms, in one sense are easy to fill out, but Jessica understood how they should be filled out in that professional way which resonates with NDIS more. That’s critical the way she filled the form out.”
With Jess’ help, he was accepted for access to the NDIS within just three weeks! After 18 months of back and forth, he finally received a positive outcome. Together, we are giving people with MS like Grant the best quality of life possible and the opportunity to reach their goals.
CONNECTING WITH US
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