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MSWA Bulletin Magazine Summer 2022

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Keeping your cool this summer | Welcome Melanie Kiely CEO | MSWA Stationary Cycle results | Pain and pain management series: Part 3

MSWA

MSWA CLIENT GIVING BACK AND FEELING FORTUNATE Julia Hewson has been living with MS since the 1980s. She considers herself fortunate that the condition hasn’t slowed her down much over the years, although she wasn’t to know this would be the case in the early days of diagnosis. Her journey began in 1988 while living in Canberra and working as the personal assistant to the construction director of the New Parliament House. It was the year Queen Elizabeth officially opened the building. Julia began experiencing headaches, fatigue and eye issues. “It felt like I had gravel in my eyes,” she recalls. After several eye tests, she saw a neurologist and then boarded a bus to Sydney for an MRI. MS was diagnosed. “I was devastated!” says Julia. “I was a 39-year-old single career lady. I was living alone and had a mortgage. How was I going to manage?” At this point, Julia had lost the sight in her right eye and had blurred vision in the other. “I could not drive, I couldn't see the individual lines on the clothesline. Sharp knives and boiling water became extreme hazards. I couldn't walk a straight line, couldn't play tennis, couldn't walk the dog and found it almost impossible to manage on the computer at work.” Julia’s parents, friends and work colleagues rallied around her to assist. She recalls that, back then, it was difficult to know the answer to the question: ‘should I tell the boss I have MS?’ Thankfully, the senior management team she was working with were very supportive. “My colleagues picked me up for work and delivered me back home each day. At home, friends' kids mowed the lawn and people kept in touch daily with many offers of help. I made a 'deal' with everyone, if I needed help, I would ask.” With steroid medication, her sight eventually improved and returned, although fatigue and headaches persisted. After a few months, she ceased the medication and, remarkably, she hasn’t required any medication since. “Life went on!’ says Julia. MOVING TO WA In 1990, she met Rod, her now husband. A year later she moved to Western Australia to his home in Stoneville and, in the years that followed, they started a business, designed and built a house, reared beloved dogs, transformed their large garden and got married. Julia joined MSWA in 1992. She recalls, “Fellow Member Patrick McGurk and I began a ‘Workers with MS’ peer support group. It consisted of up to 20 other people with MS and continued for many years.” Patrick and Julia remained great friends until his death in 2013. THE ‘TRIPLE J’ YEARS At this time, MSWA’s Margaret Doody House in City Beach (then known as Norbury House) was the only respite care available in WA for people with MS. Julia joined forces with two members of the peer support group – Jaci Ward and Jacqui Willis – to fundraise for the facility, something they did for over 10 years. “We wanted to make Norbury House as homely as possible for the residents, who all had advanced MS. And for staff as well – we liked being able to help them purchase things for the kitchen and laundry.” 'Triple J' – as the three ladies became known – raised many thousands of dollars over many years selling chocolates, amongst other fundraising activities. In September 2003, the trio were recognised by the WA Disability Services Commission for their fundraising work and received the Disability Services Commission 'Making a Difference Award' presented by the Hon Sheila McHale, Minister for Disability Services at the time. 22

“While Jaci, Jacqui and I all had MS, albeit varying degrees of MS, we were of the belief that we were far more fortunate than others, particularly those who stayed at Norbury House. We wanted to make their stay more homely and comfortable. I think we achieved that.” Sadly, both Jaci and Jacqui have now passed away. THE JOY OF GIVING BACK Julia retired a few years after moving to WA, which allowed her and Rod to travel. “We've had some wonderful trips and experiences on both business trips as well as holidays, often combining the two,” says Julia. “And then I got involved in the wonderful world of volunteering. “Both my parents volunteered throughout their lives so I grew up with that belief – to give back to the community. I have done the same, particularly since retiring many moons ago.” Julia’s volunteering experience is rich and varied – from op shops, to CHOGM, to Meals on Wheels. For 11 years, she and her dog Nellie regularly visited a gentleman in a local nursing hostel. “He was a very special man,” recalls Julia. “He spoilt Nellie rotten!” In 2000, her voluntary work was recognised when she was invited to be a torchbearer for the Sydney Olympics. “It was a wonderful, life changing experience!” For the past three years, Julia has been ‘meeting and greeting’ people at St John of God Hospital in Midland, a role she particularly loves. “Volunteering isn’t always about the ‘position’, it’s the people with whom you volunteer that makes it good and if you’re lucky, it’s both.” HER HEALTH TODAY Over the years, Julia’s health has remained stable. “I have yearly MRls and I still have the occasional 'bad' day but overall, I've been very fortunate,” she explains. Since diagnosis in the eighties, Julia has experienced dizzy spells and ‘head spinning’ episodes. Recently, her neurologist took action to investigate this more thoroughly. He referred her to the Perth Dizziness and Balance Clinic, where they discovered that – separate to the MS – she had benign paroxysmal positional vertigo (BPPV). “It's a real bugger!” says Julia. “But the clinic gave me simple exercises which have been of great assistance. Now I know what these bouts of vertigo are and how to deal with them.” Julia continues to play tennis, something she’s done for most of her life. She also loves golf, yoga, pilates and morning walks. “Over the years, I have not needed to use the services offered by MSWA very often but I have always continued my Membership. Just every now and then I have sought their advice on matters. In the 30 years I've been in WA, I've seen MSWA grow from a much, much smaller organisation run by Debbie Karasinski, to the huge organisation it is today. What they’re doing for the community is fabulous, from the Mega Home Lottery to providing services. And they’ve never raised their Membership fee in all those years. Incredible! “So, life for me with MS has been good. I do everything I can to look after my health, however I do appreciate l have been extremely fortunate. “My attitude or philosophy in life is – one day at a time! Cross each bridge as you come to it, not before. Grab opportunities that come your way with both hands. Ask for help when needed. “I like to be busy, I love dealing with and helping people. “And one should give back. I think I’ve done my bit and I’m still doing it!” 23