Donna was a vibrant, daring young adult whose life motto was, ‘try everything once!’ This applied to traveling around Australia and New Zealand on Contiki tours, and even trying extreme sports like bungy jumping.
“It was a pretty wild thing, but I did it!” Donna reminisced.
Now, Donna lives with a Functional Neurological Disorder (FND), which she describes as ‘an issue with the software, not the hardware of the brain’, as nothing shows up in a brain scan.
While FND can present differently, in Donna’s case, it causes regular seizures resulting in temporary but enduring full-body paralysis, which leaves her mostly bedridden in hospital for weeks at a time. As of September 2022, Donna had already spent 15 weeks of the year recovering in hospital. Her ability to walk did not return after her most recent stay.
“You think you get to a point where you can cope with it, then something else happens,” Donna said.
“Every time I’d have an episode, my walking would get worse. Now, I literally can’t move a muscle. I can talk, and that’s it for the first few days, then my hands start coming back, then… I’d have another seizure, so I’d go backwards.”
During her adventurous early adulthood, Donna was inspired to live her young life to the fullest, as she was already familiar with the challenges people with disabilities can face every day, and the reality that it can happen to anyone. Donna worked in the disability sector across Bundaberg, Bowen and Brisbane, teaching people with disabilities to live independently, until she herself became unwell.
“It’s all turned around and I’m the client now,” Donna said.
Being so familiar with the importance of people with disabilities retaining their freedom and autonomy, Donna refused to let her condition keep her in hospital, when she knew she would recover faster in the comfort of her own home.
“I’m such an independent person and I hate having to rely on people,” Donna said.
“I’m a lot more comfortable living on my own and just having people come around to help me. I hate being a burden… I want to do as much as I can.”
Donna was also worried about the likelihood of being transferred to a rural hospital for a more extended stay. The other alternative was prematurely moving into an aged care facility, where they would have the right equipment available for her recovery, but she would be surrounded by people much older than her and would lose a significant amount of control over how she lived her life. Luckily, Donna’s sister Carmel, who works as an occupational therapist, remembered Youngcare had funded grants for some of her clients in the past, to help them avoid similar situations.
Donna received a timely Youngcare Home Support Grant to fund an adjustable Hi Lo bed and pressure-relieving mattress for her home. These simple items helped Donna put an end to her ongoing extended hospital stays and let her recover comfortably at home, closer to her family, friends and her dog Tilly.
“The difference in Donna’s mood and ability when she was able to get home, was just chalk and cheese… and it wouldn’t have been done without the grant,” Carmel said.
To celebrate her 50th birthday and her newfound freedom, 15 of Donna’s closest friends and family threw her a surprise birthday party.
“I’d never had a surprise party before, I cried,” Donna recalled.
Prior to Donna’s latest hospital admission, she was struggling to move around her home and would become easily exhausted from minimal exertion. Her ability to live independently was being greatly limited by her condition.
“I’d try to head down to the letterbox, and I’d barely be able to turn around and come back because I was worn out,” Donna said.
Donna’s energy was so limited, she was forced to plan and prioritise whether she’d check the mail or go out to buy groceries or see family and friends in the same day. Carmel recommended Donna upgrade from a manual to a motorised wheelchair, which Youngcare was also able to fund in the July round of its At Home Care Grants. Donna said the wheelchair has already made a world of difference in her life, giving her back the ability to perform essential tasks for herself, without compromising her social life.
“It’s those simple things that make me feel worthy because I can actually go and enjoy life and be independent,” Donna said.
Donna and Carmel are both very grateful to Youngcare and its supporters for changing Donna’s life and emphasise how important it is to be able to exit inappropriate housing in a timely manner, while retaining freedom and independence for a better quality of life.
“You don’t realise what you do to help us out,” Donna said.
“It’s just everything… It’s the independence. It helps so, so much. Thank you.”
In the weeks following Donna sharing her story with Youngcare, she was readmitted to hospital but only stayed two weeks as she had the right equipment to recover in comfort at home instead.
