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MSWA Bulletin Winter 2020

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  • Neurology
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Telehealth at MSWA, Feedback from Customer survey, Eating mindfully, Research roundup

MSWA

MSWA MEMBER REACHING ACCEPTANCE AND LOOKING TO THE FUTURE Diane King was on the long road to recovery from an horrific work accident, when a routine MRI returned a result that no one was expecting. Prior to the accident, Diane was fit and healthy. She went for ten kilometre walks in the South West, and was often up and down ladders as part of the cleaning business she still operates. In 2016, Diane was at a client’s home when she stepped into a dark room, unaware that she had opened the door onto a set of stairs with no landing. She tumbled down the stairs and into the basement. “My arm snapped on the way down and I was knocked out,” recalls Diane. Her colleague rushed her to hospital, where she underwent emergency surgery on her arm. Her lower back was significantly bruised and she had lumps on her head. Eight months later, she had begun to recover. A friend questioned why Diane had never been offered a scan to check her head for damage. So, Diane booked an MRI. When the results came back, Diane was sent to a neurologist to commence treatment for MS. “My world fell apart,” says Diane. “I was still dealing with the injuries from my accident and now this. “I was devastated. How? Why? When?” She was diagnosed in 2017 and Diane has good and bad days depending on factors such as weather, stress and physical challenges. She finds it difficult to walk more than 50 metres and she suffers from muscle stiffness. She regularly attends the gym at the MSWA Vasse Service Centre, which was relocated to its new and superior site in 2019. Diane trains with a physiotherapy assistant – currently on a one-on-one basis due to COVID-19 precautions. Her main focus is keeping her body free from stiffness, for which she follows a reformer, bike and stretching routine. When she first reached out to MSWA, the Customer Engagement Team advised Diane how to apply for NDIS funding. Because of the permanent back damage from her accident, Diane had been seeing her own physio for some time. She is now being treated with funds provided through a self-managed NDIS plan. “My physio has been with me through the whole journey. I went to her for my injuries and now she treats my MS.” Diane has now been living with MS for over two years, and it has been a period of adjustment. “It’s about knowing your limits,” she says. For example, she will anticipate that a spell of hot weather will make her very fatigued, which is a common experience for most of those living with MS, and it can also worsen other symptoms. Diane is still running her cleaning business, saying it keeps her active but that it’s also quite taxing on her body. 18

“I look after myself a lot better. I eat healthier. My hope is to live as independently as possible for as long as possible. I know there are services for more high dependency, but I’m not ready to think about it just yet.” Diane has done a lot of research into a possible link between physical and emotional trauma and the onset of MS symptoms. Scientific evidence on this connection is mixed. The results of one study did suggest a statistically significant association between head trauma as an adult and the risk for developing MS. 1 However, cohort studies did not. MS is multifactorial, with a strong autoimmune component. Things like genetic susceptibility and environment also need to be taken into account. “Before my accident, there were absolutely no symptoms. After the accident, I was really, really messed up. Lumps all over my body. I do believe there is a connection.” Diane is grateful to be surrounded by a small but supportive group of people. She lives in Dunsborough with her teenage daughter and son, who this year celebrated his 21st birthday in an unexpectedly low key way due to the COVID-19 social restrictions, but they all enjoyed marking the milestone. Her eldest daughter lives in Perth and is expecting a baby very soon. “I used to go bodyboarding in the surf. I don’t do that anymore. But I can snorkel and I’ve always wanted to swim with the whale sharks. I go for beach walks and set goals to build up stamina. I think it’s important to give yourself a challenge every single day, to keep that level up.” Diane also loves photography and wants to do more of it in the future. “I used to be able to go down bush tracks and clamber up onto rocks and ledges to take photos, now I have to take the more stable tracks.” Above all, Diane is looking forward to being a grandmother. Due to COVID-19 precautions, she knows she might have to wait a while for that first cuddle, but these days she has reached a level of acceptance about life’s curve balls. “The thing with MS is you literally have no idea what your future is. We just have to go with the flow and see what happens.” 1 Lunny, C.A., S.N. Fraser, and J.A. Knopp-Sihota. “Physical trauma and risk of multiple sclerosis: A systematic review and meta-analysis of observational studies.” Journal of the Neurological Sciences 336 (2014) 13–23. 19