POWER OF POSITIVITY
Personal trainer Leanne Sklavenitis was diagnosed with incurable MND several years ago but with incredible willpower and new technology is making the most of every moment
Leanne Sklavenitis watches the butterflies dance around her. Whenever she sits outside she follows them with her eyes and then, just like always, one gently finds its way to her and lands softly on her skin. For the time it sits there, its wings lightly blowing in the breeze, she allows her world to be as big as its world, full of possibilities, discovery, wonder and freedom. A world Sklavenitis, 58, once had, when she worked in the fitness industry for 30 years as a personal trainer fronting 11 group fitness classes and running about 30km a week.
That world, however, is fading as motor neurone disease (MND) slowly takes away her freedoms and independence.
The cruelties of her incurable
MND diagnosis have rendered her immobile, she’s unable to speak as her muscles rapidly waste away. She is dependent on 24/7 care, which includes a team of 16 people on rotation.
For her and those around her, including her husband Steve Spangenberg, 60, and daughter Maree, 27 (from a previous relationship), it is shocking and heart-wrenching to witness. Yet despite all it has taken from her, Sklavenitis has outlived her prognosis where doctors told her she had between two and five years to live when she was diagnosed in 2017. Her legs were impacted first, confining her to a wheelchair, before the muscle weakness crept to her hands, taking away simple tasks like brushing her teeth or opening water bottles. The cruellest of all, by 2019, she lost all ability to speak. But years later, with the power of technology, parts of Sklavenitis’s world she thought were never coming back have returned and she’s been given a voice.
Even more powerfully, she’s using the subtle movements of her eyes to tell me all of this – and her story – herself. I’m sitting with Sklavenitis in her Sandgate home, on Brisbane’s bayside, and we are having a conversation as she uses eye tracking technology to communicate.
It’s called Tobii Dynavox and the screens are set up on the desk in front of her and her eyes begin to move across the keyboard on the screen. As she looks at letters, words and sentences start to form, then the text converts to speech. Sklavenitis has the voice she thought she’d lost and, in her own words, she can explain how incredible this feels. “The technology is essentially how I communicate with the world around me, it keeps me alive!” she tells me. “This technology tracks my minute eye movements across a computer screen so I can control a mouse cursor on the screen with my eyes, no hands required. This way I’m able to continue to actively participate in conversations, type documents, research online, use email and messaging platforms.
“There is not much I can’t do. What’s been really important to me is that this technology enables me to stay connected with family, friends, colleagues and staff.”
It’s how she’s managed to maintain the fitness business she founded – Fitness Tips – and operate her online platform from her home twice a week. With the help of some staff, including Donna Sallmann, who has been working for Sklavenitis since 2020, she writes wellness programs for clients and regular blogs on nutrition, exercise and health. She has also become a motivational speaker travelling to various events across the country presenting her story, using her text-to-voice technology and