Before being diagnosed with his own degenerative condition, Kerry Kelb was the primary carer for step-son Alex Kassay.
Living with dyspraxia, an intellectual impairment and autism, Alex requires around the clock care and support – something his family admits “takes a village”.
But after being diagnosed with a form of spinocerebellar ataxia, Mr Kelb realised taking care of Alex was going to become much more difficult over time.
“I’ve been the sole carer of the home for a long time, and after a while my condition just got on top of me. I had become resentful, I got lazy around the house, my disorder was slowly taking away my independence,” he said.
Spinocerebellar ataxia typically affects coordination of hands, speech and eyes and can cause muscle weakness and unsteadiness.
For Mr Kelb, the overarching feeling was fatigue, which meant caring for 24-year-old Alex, had become more challenging.
“It’s heartbreaking to see and to go through, we would all be physically and mentally drained at the end of it,” he said.
“It’s hard enough for a physically capable person to keep on going, let alone someone with a disability that’s already taking away their independence.
“The most confronting part of my disability has been the fatigue levels, and also the realisation that my brain is slowly failing me in areas such as memory, the cognitive function is declining – that’s the scariest part.”
December 3 is International Day of People with Disability, aimed at increasing public awareness, understanding and acceptance of people with disability and to celebrate their achievements.
While Alex was one of the first to join the National Disability Insurance Scheme five years ago due to his age, Kerry only became eligible in July this year.
Kerry now receives funding for support workers to help around the home with cleaning and other chores, and also attends regular speech pathology which helps to maintain his speech, and physiotherapy to maintain his mobility.
“The support workers are the biggest thing that have made a difference in my life,” he said.
“I’ve got somebody right there next to me wanting to do things with me, and that gives me the motivation I didn’t previously have.
“Alex has often emulated his mother’s and my moods and now I have more energy and less stress at the end of the day, I’m able to stay positive and upbeat which has in turn created a harmonious atmosphere within our home.
“My pride is returning, the isolation I was feeling is subsiding, my home feels like it is a home again. It’s been life-changing but more importantly it’s life-saving.”
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