MSWA is centred around providing vital support and services to people living with neurological conditions in Western Australia. This includes people living with multiple sclerosis, stroke, Parkinson’s disease, Huntington’s disease, motor neurone disease, and acquired brain injury, to name a few.
A wife, mother, grandmother, and MS fighter
Kylie Jones is one of those people. She’s also a wife of 34 years, a mother to three, and a grandmother to six. She lives with multiple sclerosis.
The symptoms began when Kylie was in her late 20s and within a few years, her life changed forever. It started with head pains, vision problems, and blurred sight. Then, it was the consistent discomfort, muscle weakness in the arms and legs, and trouble with coordination. She went from walking with a stick to a frame, and now uses a wheelchair.
She still lives at home with her husband and carer, Brett, but visits the MSWA Beechboro Service Centre every Monday for physiotherapy, speech pathology, occupational therapy, outreach, counselling, and anything else she requires.
“The thing about MS is that everyone’s symptoms are different. Mine include not being able to walk, impaired balance, and loss of feeling in my hands, legs, and feet,” Kylie said.
“When you’re diagnosed, you think all your best made plans end. It’s all over. But they don’t, it’s just starting,” she said.
The MSWA impact
While the life she once knew has now changed, the support and care provided by MSWA makes a world of difference.
Kylie expressed her gratitude towards the MSWA carers particularly at outreach, noting they like to check and make sure everyone is well.
“The carers at MSWA help with everything as well as answering any queries you have. They genuinely care, they need to know that you’re doing things alright.”
“They don’t really treat it like a workplace, it’s more like a family. When you’re having your physio session, you’ll have a good laugh and a heart to heart. The MSWA staff are more like friends than anything. They are so social, it’s like going to your friend’s house,” she said.
According to Kylie, it helps being around people who are living with the same condition, even though everyone suffers differently. But without Brett, she wouldn’t have even tried.
“I tried for so long to get Kylie to go to MSWA outreach sessions, but she said she didn’t want to see how she was going to end up. The best thing was finally getting her here [MSWA Beechboro].”
“Without MSWA, she would have given up a long time ago. The more depressed you get, the worse the MS gets. Some days, she really doesn’t want to be here, but I bring her and she feels so much better. They [MSWA carers] teach you how to deal with it,” Brett said.
“She’s still the same Kylie. We’re still the same, we’re still best friends. She just can’t do the same things,” Brett said.
Donations and winning the MSWA Mega Home Lottery
Kylie knows first hand the tremendous difference the support from the MSWA Mega Home Lottery and other fundraising initiatives makes. Without it, her life would look very different.
“Donations fund vital research to help people like me, with MS. For them to one day say, ‘we can stop this, it’s all worth it,’” she said.
It was the reason why after coming back from a caravan trip with just $17.00 in their bank account, Brett and Kylie decided to buy a ticket to the MSWA Mega Home Lottery. They put it on their credit card and to their absolute shock, won.
A week later, the phone rang in their 2.5 bedroom home. Brett thought it was a scam or MSWA trying to sell him another raffle ticket. Instead, it was the life-changing call declaring the couple had just won the Grand Prize.
“We couldn’t believe it. We had been doing it so tough for so long and it was like, this is finished now.”
“We put the Grand Prize house on the market and sold it because it wasn’t suitable for Kylie. We decided we liked the area we already lived in — close to hospitals, shops, and our kids. So, we demolished our old house and built a whole new one,” Brett said.
“We now have widened doors, a therapy pool, and extra beams in the bathroom for if Kylie ever needs a hoist. We also have a home theatre with big black curtains like the cinema.”
“In all our years, we never had a garage or an ensuite. All the simple little things we could never have, we can now have. Everything is just easier now. The funny thing is we still live the same. We still sleep on the side of the road in our caravan and drive the same car we had before we won.”
“I had sold my motorbike a long time ago to buy Kylie a wheelchair, so the first thing she wanted to do was buy me a motorbike. We also upgraded our motorhome to a caravan, so we could drive across crossings and onto the beach.”
“It’s such a relief knowing we can do whatever we want now. And that when we do pass away, we don’t have to worry about our children. We now know, they are going to be just fine. We’ve been poor to the point where we’ve had to leave our car in the workshop and all of a sudden, we’re rich. We’ve done it all.”
The power of MSWA
Today, MSWA’s team of experienced nursing and allied health professionals provide information and a range of support from the time of diagnosis. In addition to direct care services, MSWA funds vital, innovative research projects into neurological conditions.
Twice a year, MSWA run a Mega Home Lottery to raise funds which helps them to continue to provide these services and research. The next MSWA Mega Home Lottery is due to launch this Monday — August 19th — with at least two fabulous homes up for grabs. Stay tuned for more details or follow MSWA here.
