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MSWA Bulletin Magazine Autumn 2021

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Get to know your new President | Resilience: I get knocked down, but I get up again | MSWA’s m contribution to research | 36 years of Bulletin

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MSWA CLIENT When Nelly came to visit her, Rebecca told her to choose a new bridesmaid. Nelly refused to hear it, saying, “I’ll push you down the aisle in a wheelchair if that’s what it takes!” Rebecca thought, “Well there’s nothing else for it – I’ll need to learn to walk again.’” COMING HOME Upon discharge, Rebecca was much more mobile, yet she still couldn’t see. Her hands shook and she needed the aid of a wheelchair or stick to get around. “This was as far as people thought I would get,” explains Rebecca. But she and her family refused to accept that, and with the help of the rehabilitation speech pathologists, physiotherapists and occupational therapists that visited her at home, Rebecca continued to improve. It was at this time that Rebecca was introduced to neuroplasticity. She recalls that reading The Brain That Changes Itself by Norman Doidge had a profound effect on her. Neuroplasticity is defined as the brain's ability to reorganise itself by forming new connections. This process allows the nerve cells in the brain to compensate for injury and disease and to adjust their activities in response to new situations or changes in their environment. Rebecca realised that if she was willing to put in the work, incredible things could happen. So she put in the work, committing to practicing the exercises she had been set for 2-4 hours daily, with the help of her ever-positive dad. Eventually her sight came back. Her speech incrementally improved and in October 2015, Rebecca walked down the aisle, unaided, at her best friend’s wedding in Queensland. “I felt hopeful that I could still lead a happy and fulfilled life despite the brain injury." LIFE AFTER REHAB It took six months for the tumour they removed from Rebecca’s brain to be diagnosed. Rosette Forming Glioneuroma of the Fourth Ventricle is a rare type of tumour that affects the central nervous system.. Rebecca’s just happened to be on the brain. Today, the tumour is still there. However, it is very slow growing. In 2016, two more tumours were found on the brain stem. The only intervention possible is close monitoring via yearly MRIs. Whilst Rebecca’s recovery from what happened has been significant, she still struggles with symptoms like neurological fatigue, vertigo, photophobia, tremors, slow reflexes and migraines. A lot of these symptoms are due to nerve damage in her neck and shoulders. In addition, she’s been advised that the hormones from pregnancy may impact the tumour growth. “It’s another thing I’ve lost,” she says. Remarkably, it wasn’t until two years after the surgery that she experienced a period of depression. She recalls going to see her GP, who asked her, “What do you want to do with your life now?” ADVOCACY & PUBLIC SPEAKING In 2018, Rebecca began speaking to neurologists and neurosurgeons as a lived-experience speaker. Her recovery defied the odds and her journey is now used as a training tool in hospitals across the state. She’s also spoken as part of a local TEDx event, currently sits on the Board of the Ishar Multicultural Women’s Health Centre, and is training to be a life coach. Each May, she is heavily involved in the international brain cancer awareness campaign, ‘Go Grey in May’. Rebecca is passionate about challenging the assumption that a young person with a brain injury will end up in full time care. “There needs to be a focus on putting more effort in at the beginning, and tailoring the rehabilitation process to the needs and interests of the young person. “You need to tie rehab in with what people love. I made great progress when a speech pathologist incorporated my love of poems and songs into the exercises she set. “Surround yourself with the right supports, who listen to what’s important to you.” She recalls one physical therapist laughing when she said her goal was to walk in heels again. “I’m a young vibrant person, that goal was very serious to me. He didn’t understand that.” In 2018, Rebecca joined MSWA and accesses counselling, occupational therapy, physiotherapy, customer engagement and social welfare. She is particularly enthusiastic about MSWA’s commitment to research, particularly in the area of neuroplasticity. “Neuroplasticity exists and we need to harness that power” says Rebecca. “The possibilities could be endless. It could be applied to anything, not just disability or brain injury.” 22

SKYDIVING INTO THE BLUE TANYA MURPHY MSWA CLIENT Photos courtesy of Skydive Perth. When I first told friends I was planning on going skydiving they asked if it was something that had always been on my bucket list, something I just hadn’t got around to before I was in a wheelchair. But the truth was, with my 50th birthday approaching, I was trying to find something special I could do to celebrate the milestone. Then one of my relatives told me about someone they knew in a wheelchair who’d gone skydiving and I thought ‘If they can do it so can I!’ I decided then that I wanted to challenge myself. To really step outside my comfort zone. I religiously attend Physiotherapy and Outreach every Tuesday at MSWA Rockingham. My regular Physios Luke, Sharon and Ashleigh, who help me maintain my current level of independence, cheered me on when I told them about my plan, and Luke even helped me to write this article! I booked in to skydive at York, just outside Perth, only for Skydive Australia to announce they were shutting down their York operations and moving to Rockingham. Never mind, that suited me even better living down this way. So I re-booked at Rockingham for early 2020 only for COVID to hit and shut things down again! I told them to keep the money and call me when they re-opened. Despite the setbacks I was determined to go through with my plan. When I heard they had reopened I called them again and finally booked in for 19 December 2020. A year too late for my 50th birthday but I was finally going to do it. When the day came the team at Skydive Australia were fantastic at looking after me and making sure everything I needed was taken care of. My tandem instructor Don had even designed a special harness for people in wheelchairs that allowed him to pull their legs up into place for the landing if, like me, they weren’t able to do it themselves. I won’t lie, when they first swung my legs out of the plane ready to jump, I thought ‘what am I doing?’ I had my eyes clamped shut at first, but forced myself to open them and enjoy the amazing view. After landing all I could think was ‘WOW!’ I’m so grateful that someone in my condition was able to have an experience like this. I highly recommend the experience for anyone and everyone, especially anyone with a disability. Don’t let your situation stop you from chasing amazing experiences and living out your dreams. If I can do it anyone can! 23

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