Camperdown local Andrew, 60, knows life can change in an instant. Once a busy shop manager and support worker, an unforeseen rare condition reshaped his world.
Grateful to live in Australia, able to access the National Disability Insurance Scheme (NDIS) for support, Andrew said it’s given him and wife Nerida renewed hope.
‘I honestly don’t know where we would be without the NDIS,’ he said. ‘It’s given me back my life!'
Andrew’s health story began years ago when he lost feeling in both feet. He and Nerida, a physiotherapist, knew something wasn’t right. For years, doctors and specialists ran test after test, but no one couldn’t explain what was causing his numbness.
‘Eventually, I was told it’s idiopathic (meaning cause unknown),’ he said.
Andrew gave up his job, when standing for hours unloading and packing heavy stock became impossible.
Keen to still work, he retrained to become a support worker. Andrew loved the job, but a few years later, he was officially diagnosed.
‘I was told I had a rare genetic condition called bilateral Charcot’s arthropathy,’ he said.
‘Basically, the brain sends muscle memory to the nerve endings to keep the muscles going. Mine just stopped working, so when I tried to put pressure on my feet, they would just collapse. Now it’s spread. I don’t have any feeling below my knees.’
Since Andrew’s diagnosis, he’s worn a big boot on his right foot to help him to walk.
‘It’s a bit like a moon boot, but it’s made of hard plastic and it’s heavy,’ he said.
Andrew has also had 21 operations just on his feet.
For each hurdle, Andrew remains positive and credits the NDIS for supporting him.
‘For now, we are happy living in Camperdown. My NDIS plan supports what I need at the moment,’ Andrew said.
‘I’m in constant contact with my physio, occupational therapist and my support coordinator. I’ve got a great team of support workers.’
The NDIS has also given Andrew and Nerida peace of mind about what’s to come.
‘Eventually, I’ll be in a motorised wheelchair,’ Andrew said. ‘The NDIS know all about it. I’ve talked to my planner about my future – what it will look like and what supports I’ll need.
‘It’s good Nerida won’t have to end up being my full-time carer. We can still enjoy life as a couple. She can still run her own business; we can do still do things together or separately. Nerida doesn’t have to stop what’s she’s doing or worry about me!'