Gillian was only 30, nursing her three-week-old newborn and caring for her two-year-old toddler, when she realised something wasn’t quite right.
Having worked as an occupational therapist (OT) for the past ten years, she was familiar with neurological conditions and suspected she may be experiencing the early symptoms of Motor Neurone Disease (MND).
“I thought, ‘all of these symptoms are not looking good’, then the tests confirmed it,” Gill said.
MND affects the nerve cells, causing muscles to fail and subsequently weaken and waste, which usually affects ability to move, speak, swallow, and breathe. The average life expectancy after diagnosis is only 27 months.
Gill was living in the UK with her husband and sons, and they made the tough decision to move back to her hometown of Bowral, New South Wales, to be closer to her family and to have more accessible surroundings, as she was familiar with how rapidly MND can affect mobility.
“Being an OT, I thought, Australia’s a lot more practical for access,” Gill explained.
“England has a lot of two-story houses, and since it’s all older, it’s not very accessible.”
Now, ten years later, Gill still maintains a busy, independent lifestyle, alongside her husband and her now 10 and 12-year-old sons. She now uses a power wheelchair due to limited use of her muscles, and has dysarthria, which affects her speech.
“There’s still no treatment or cure for MND, although they have a few trials going,” Gill said.
“I’m on one and I think that’s slowed it down, so that’s encouraging.”
Gill has maintained a full schedule since moving back to Australia, spread between fulfilling her daily Mum duties, driving a charity that raises funds for MND research, and taking on a leadership role in a worldwide organisation that advocates for women’s rights. However, despite her tenacity, she had a new challenge impeding her daily activities ̶ the family home’s muddy, gravel driveway.
Gill can maintain her busy lifestyle, with much easier access to her car, thanks to her new driveway upgrades.
Like many NSW homes, the persistent La Niña of 2022 wreaked havoc on Gill’s driveway, making it difficult for her to get to her car or back veggie patch, and causing her to regularly wheel mud inside the house. There was also an inconveniently-located tree making getting around in her power wheelchair even more difficult.
“The garden had been so wet, and before the driveway was done, if I went down there, I’d end up getting bogged,” Gill said.
Her OT suggested applying for a Youngcare grant to fund tree removal and driveway resurfacing, but Gill thought, ‘nobody is going to fund that!’. However, the Youngcare grants panel recognised that by significantly limiting her accessibility, the driveway was impacting Gill’s independence and freedom, and as a result, her application was successful in the July round of At Home Care Grants.
Gill can be a part of family activities and maintain her beautiful veggie patch.
Gill was surprised and extremely grateful.
“I’m all about my independence,” Gill said.
“I think having MND, you end up grieving a lot of your losses, and so… it’s one loss that you don’t have to give up.
“I’m a part of the family, rather than an onlooker. I can be a mum.”
Aside from maintaining her independence and increasing her access to all areas of her home, Gill has also been enjoying watching her sons turn the new driveway into a cricket pitch, and it has quickly become the family cat’s new favourite spot for sunbathing!
