MSWA CLIENT MARGARET’S

MSWA CLIENT MARGARET’S STORY Margaret and Brett - Cable family gathering at Whiteman Park “I used to donate, and I’d always buy a lottery ticket from MSWA,” recalls Margaret Cable. “Little did I know that I would need their support one day.” Margaret was diagnosed with MS two years ago, at the age of 59. But her journey with MS began over 15 years ago, when she first noticed a weakness in her right arm when raking the garden. Unfortunately, over the next decade, despite worsening mobility on her right side, visits to the GP and a specialist never amounted to a referral for an MRI. It wasn’t until Margaret booked in to see a podiatrist for her walking difficulties that multiple sclerosis was first suspected. “I hadn’t even sat down and the podiatrist said, ‘Margaret you need an MRI to find out what your neurological problem is’.” The podiatrist wrote a letter to her GP and Margaret immediately went next door to her doctor’s surgery to get the referral for an MRI. The test showed lesions and – after some COVID-19 related delays – Margaret received an appointment at the Perron Institute and, at last, a diagnosis. LIFE IN TOODYAY Margaret was born in Africa and has lived in England and Switzerland. After falling in love with a handsome truck driver from WA, Margaret moved to the small town of Toodyay. She and Brett have been married for 20 years. For many years, Margaret worked in stores for Bucher Municipal. “They make bin trucks,” explains Margaret. “I was this little tiny lady working with the huge items – 300 kg cylinders, paddles and the large pieces of metal that make up a truck.” All the while, she was experiencing undiagnosed neurological issues. “I used to get by with a forklift. And my colleagues were very accommodating. They would help me out with certain tasks, and they never asked why I couldn’t manage something.” In 2013, the parent company made the Toodyay storeman position redundant, and Margaret was let go. “So it never got to the stage where I was let go because of my MS,” she explains. Finding a new job proved difficult. “I was looking for work, so I’d go for a medical and they’d turn me down. But at the same time, the doctors didn’t ever find anything wrong with me. It really knocked me down. I felt like people thought I was lazy or just faking it. So when it was labelled ‘MS’ it was like this huge burden was lifted off me. Finally, somebody understood! “Now I had a reason that explained why I couldn’t take the heat any more, why I couldn’t work any more. “When your arm and leg don’t work, it’s hard, and when people label you as lazy, that’s even harder.” FINDING SUPPORT At her assessment at the Perron Institute, Margaret was supported by one of the MSWA Neurological Liaison Nurses who work in conjunction with Perron. “That’s how I found out about how MSWA could help me,” she explains. Shortly after, the NDIS sent Margaret some paperwork. “This was all instigated by Perron and the MSWA Nurse.” 20

Through her NDIS funding, Margaret receives Support Coordination, Occupational Therapy and Speech Pathology from MSWA. “I saw an MSWA Counsellor when I was first diagnosed. I don’t need help with that side of things yet, but it’s good to know they’re just a phone call away.” EMBRACING TELEHEALTH Margaret’s MSWA Speech Pathologist travelled to Toodyay to do the initial assessment, but since then Margaret has been dialling in to fortnightly telehealth appointments. “It makes far more sense. Otherwise, Clare is having to take three hours out of her day to get to Toodyay, and I’m getting billed for that time too.” “We use phone, Zoom, or WhatsApp – the choice is countless these days isn’t it! There’s no difference than if we were in a room together. It works just fine. There’s no disadvantage to it except that I can’t offer to make Clare a coffee!” The education Margaret has received from her Speech Pathologist has made a big difference to her everyday life. “Before I had my assessment, I didn’t know what speech pathology was! It’s not just about talking. It’s about swallowing too, and it’s about how your brain sends signals. Looking back over the years, I was often choking or coughing on things. I didn’t realise that’s classic MS. “Some techniques are so simple – like how to position my head when I swallow. And understanding what foods are problematic for me. Anything that has a solid and a liquid – like cereal – is tricky for an MS brain to process. The milk goes down the wrong way. Margaret and dog Smudge - 2 years prior to diagnosis “It’s also been explained to me why I stop middle-sentence: it’s because a neural pathway has died and my brain needs to find a way around the roadblock.” A DAY AT A TIME Looking to the future, Margaret says she trying to embrace life at a slower pace. “There’s a frustration when you can’t do something. It’s irritating to think of what I can’t do now. I can’t take my dog for a good walk, and I feel guilty about that. It’s sad thinking of the things I wanted to do. I wanted to dive with the whale sharks. I wanted to go the Machu Picchu. “But it’s nice being here in Toodyay. I have people around me who lift me up. They still expect me to be me, just with a few limitations. “I’ve scaled back my hobbies over the years. I love crafting. I make cards, but even that’s getting hard now. I can’t squeeze glue or push down on a scalpel, but there are die cut shapes you can use now, which make it much easier.” Margaret enjoys going to a cardmaking class on Wednesdays, and staying for a coffee afterwards. Being a truck driver, Brett is away for 12 days at a time. Margaret has domestic support from a few local people, but when Brett is home he is there by her side. “When I was diagnosed, Brett wanted to leave work to be my full-time carer, but then we would have no means for paying the mortgage and bills. He is always happy to help, even when he has just got home from a long trip. “I try to absorb the positive attitude of everyone around me.” 21