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MSWA Bulletin Magazine Summer 2019

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ENJOYING LIFE Jessica

ENJOYING LIFE Jessica Trew is one of approximately 200 Australians living with a rare and complex neurological condition, neuromyelitis optica (NMO). When she was diagnosed with the condition six years ago when she was 29, not much was known about NMO and there were only two websites available for Jessica to learn more. “Thankfully now, more research has been done so we understand more about it,” Jessica said. An MSWA nurse accompanied Jessica to her first specialist appointment and although she refused many of MSWA’s services initially, she eventually accepted help when her partner was in an accident. “My partner Clint became a paraplegic, so it became more and more difficult for us to manage the house and our daily life,” Jessica said. “MSWA has been a great support – I access nursing and receive domestic services once a week which is especially helpful with things like cleaning the floors and hanging out the washing which neither of us can do.” “I also go to group counselling sessions, which I love and feel really comfortable in.” Jessica’s symptoms began in 2013, when she was working as a nurse on a remote Papua New Guinean island and sleeping on a nearby ship at night. “It felt like the ship was moving all the time, even when it wasn’t,” Jessica said. “Then I picked up a pen and suddenly, I couldn’t write.” Jessica returned home but ignored the symptoms for many months until they became unmanageable. “My partner gave me a glass of wine which I poured all over myself. The next one went all over the sofa. I had lost all coordination in my hand.” Jessica was initially diagnosed with tumefactive MS, a rare form of MS which is characterised by large brain lesions and symptoms similar to those of a brain tumour. But she seemed to get worse, rather than better. “I had a bleed on my brain, and it became clear it wasn’t MS.” “An excruciating six months followed when no one knew what I had until I started vomiting. We then knew I had NMO.” NMO is a central nervous system disorder that primarily affects the optic nerve and spinal cord. Due to their similar symptoms, experts used to view NMO as a type of MS, but it is now treated as a different condition. People with NMO often have pain in the eye and vision loss. They can also develop weakness or paralysis of the arms and legs, numbness, as well as loss of bladder and bowel control. These days, Jessica has weakness in her left-hand side and as a lefthander, she had to learn how to write with her right hand. She has spasms in her hands and feet and can still experience severe vertigo and vomiting. But unlike most people with NMO, Jessica’s vision is mostly unaffected. These days, Jessica lives her life much as it was before her diagnosis, just with a few modifications. Instead of working as a nurse at a facility, she works from home as a clinical reporting nurse and during the night, gives health advice over the telephone for unwell people in detention centres. “I still work as a nurse, just from the comfort of my own home – it’s fantastic.” In her free time, Jessica still plays her beloved volleyball and netball – eight games a week! “Although it can be frustrating that I can’t play as well as I used to, I am so happy I can still play.” What is different now however, is that she accepts help. “I didn’t reach out for support until I was really struggling, but once I did, things became easier. MSWA has been a big help, in so many ways. My hopes are that Clint and I stay well in the foreseeable future so we can continue to live as well as we are right now.” 20

VOLUNTEERING VOLUNTEER COORDINATOR UPDATE Welcome to our summer edition of the Bulletin. There is always so much happening here at MSWA, and I love keeping you informed. In the past few months I have been busy interviewing new volunteers, attending Members’ camps and carers’ retreats and planning for my European holiday! Yes, I said Europe and holiday all in the one sentence. When you sit down and start relaxing and reading my article, I will have been to Europe, whizzed around a few countries and arrived home again in time for the MSWA Christmas Party. I find it amazing that so much can happen in a short space of time. While all of you have been warming your souls and getting your natural top up of Vitamin D, I will have been rugging up to keep the cool air out. Luckily, I will have thawed out by the time this article reaches you. As I mentioned, I have been on the MSWA camps for which we receive a Lotterywest grant each year. We held a carers’ retreat in August, a Member’s camp and a family camp at Woodman Point, and a South West camp for our Members down south. It has certainly kept Camp Coordinator Sumit and me busy. If any Members, carers or Members with children would like to attend one of our camps or would like more information, please don’t hesitate to contact Sumit or me on 9365 4843. I am also always looking for volunteers to assist with the Members’ camps and it would be great to have you on board. We had a wonderful milestone celebration in October for our lovely volunteer, Mary Cross. Mary celebrated her 90th birthday with a morning tea with Members, volunteers and staff at the Wilson Services Centre. Mary has been volunteering in the kitchen at Volunteers taking registrations for the MSWA Arena Ascent. Wilson for 15 years, which is an amazing achievement in itself. She is a quiet achiever and such a joy to have around. It was an honour to be part of her celebration and everyone at MSWA wished her a wonderful year ahead. This year, both the Members’ and Volunteers’ Christmas Party and International Volunteers’ Day were celebrated on 5 December, giving us the opportunity to thank and recognise our precious and valuable volunteers at the same time. MSWA is so lucky to have such a dedicated, loyal and efficient team of volunteers. If you aren’t a volunteer and you are reading this, please take the time to say, “thank you for a job well done”. People who volunteer aren’t looking for recognition for what they do, but a simple thank you always goes a long way. Our MSWA Events team has also been busy over the past few months with the Central Park Plunge, Arena Ascent stair climb and the MSWA Ocean Ride. Can you imagine plunging down the side of a building? I don’t know about you, but I would be just a tiny bit frightened. Volunteers are always needed and welcomed as these events don’t just happen and volunteers help to ensure they are run safely, efficiently and successfully. If you are keen to volunteer and cannot commit long term, then volunteering with our Events team may be a great option for you. Please call the lovely Trish Watson on 6454 3116 to register your interest in future events and you may get a sneak peek into what is on the agenda for 2020. With 2019 coming to an end, it’s usually a time for some volunteers to move on for various reasons. It is with heartfelt thanks I say goodbye and wish you good luck for your next adventure. To those staying on, have a great break and as always, it will be lovely to see the New Year in with you all. Of course, with volunteers leaving us, it paves the way for newbies to come in. If you would like to volunteer or to consider any future possibilities, please call me and we can discuss it further. Take care, and bye for now. DAWN BURKE VOLUNTEER COORDINATOR 21