Redfern NDIS participant, Andrew Grant, 49, said when he wore his new upper limb support to reach up, scratch his nose and touch his face for the first time in a long time, he couldn’t stop laughing.
“I thought it was hilarious. You have all this function, but you don’t really notice it missing when it goes slowly, but when it comes back, in one big pile, it’s quite surreal,” he said.
“I hadn’t been able to wave or clap for such a long time, then I realised this mechanical device, the Armon Edero, followed my natural arm movements so I started waving to everyone in the room. I just couldn’t stop. I thought it was excellent.”
At just 28, Andrew was diagnosed with Limb-girdle muscular dystrophy – a muscle wasting disease, affecting his hip and shoulder muscles.
An active man, Andrew said he had always done physical jobs, working outdoors for National Parks and Forestry, and as a builder’s labourer.
“I also worked in a kitchen for over a decade, then I started to lose my ability to walk upstairs and get off low furniture. From there, I found myself in a degenerative decline in function,” he said.
“When I did receive my first diagnosis, I realised I had an opportunity to reinvent myself and I could do whatever I liked.
“I enrolled in TAFE and did a two-year university entrance course, but at the end I didn’t know what I wanted to do.
“As part of that course I did an arts subject. I enjoyed art and had always drawn and painted as a hobby, so at the end of the course, I went back to TAFE to further my art.”
Andrew went on to complete a Bachelor of Fine Arts at University, but a year later, he couldn’t lift his arm to paint, which led to researching upper limb supports, and the Armon Edero.
“I showed my occupational therapist, Helen. She was so supportive, working with me to get it approved. It was like a second wind. Now I’m back painting, and really enjoying it.”
Helen is just one of a team Andrew employs through Living My Way, who support him in living the life he chooses.
“Through their daily support and assistance, Andrew engages in three weekly painting sessions, but while he’s has been an Archibald Prize entrant, had an exhibition and sold work online, fatigue now prevents him committing to bigger projects.
“My target is smaller competition art now, so I'd like to have a crack at that over the next year or two,” he said.
Likening life to a buffet, Andrew said his journey is all about getting out and trying different things and he said he is loving the choice and control offered through his NDIS plan and he feels empowered in continually reinventing himself.
“You’re only limited by imagination. Some of us are limited by our physical ability, but there's always a way around it in most cases,” he said.
