Here TV host Sarah Harris talks to Mark Liberatore, the manager of the health and wellbeing program for the Cerebral Palsy Alliance, about the importance of Steptember 2018 which improves your health and improves the lives of people with cerebral palsy.
With the aid of the organisation’s fully accessible gyms and hydrotherapy pools, Mark helps chase dreams.
We don’t talk about weaknesses and limitations in my work. Clients tell us their goals and we identify and work on their strengths to help achieve them.
Take the guy in his mid-40s, who came in holding onto his walking frame, for instance. “No-one believes I can do this” he began. “But I want to climb the Sydney Harbour Bridge.”
He had to build his strength, balance, and endurance and even improve his ability to raise his knees high enough to propel him up the Bridge’s many steps. But after hours of dedicated training, he made it.
Afterward, he was on top of the world in every sense and he’s since completed the second climb and inspired other clients to give Bridge Climb a go.
Another dream-chaser was a 12-year-old who absolutely loved soccer. He understood the game intimately and idolised Tim Cahill. However, although he longed to play in a team himself, he didn’t have the confidence – not even at school.
His cerebral palsy affected one side of his body and he found jumping difficult. He could see nothing but barriers until I pointed out he had one of the best-left foot scoring shots I’d ever seen. “And I coach football, I know,” I added.
We followed a 12-week program to build his skills and confidence and afterward he went for a trial for his local soccer team.
Two months later his mum called. He had played his first game, she said and then started to cry. He had scored a goal and been carried off the field in the celebration by his teammates.
I knew how important that was. Young people love sport and competition – most Australians do – but it’s more than that, it’s also a way of making friends and being part of something.
On a similar note, we had a nine-year-old who had such little stamina physical education lessons were proving impossible. There was one game she particularly wanted to play, a bit like netball only without the hoop. We went to her school to watch.
Teachers don’t always see what we see but afterward, we were able to show them how really easy modifications would make it possible for our client to participate without drawing attention to her limitations.
Basically, it simply involved allocating her a certain position at the attacking end of the pitch so she no longer had to keep running up and down and could also score a few goals.
Her mum told us that the biggest outcome of our success was that her daughter was now being invited to birthday parties. She never had before. Because she’d always been sitting apart on the sidelines, the other girls presumed she didn’t like them.
Most of the work we do here is simply to help people perform daily activities that the rest of us take for granted. One woman, in her 50s, was no longer able to get out of bed unaided. It meant she needed to employ a carer and her daughter had to move interstate to be with her at night.
Our team created a specialised program to help her with rolling, sitting upright and building her core strength to help her maintain her posture. After about 20 weeks, she was once again able to get out of bed confidently and she’s maintained that strength three years later. Everyone’s independence has been restored.
Another woman couldn’t lift her arms over her head as a result of her cerebral palsy as it caused muscle tightness or spasticity. She was only in her twenties but struggled to get dressed and could only wear zips and button-ups.
That might have gone unnoticed except that at a team event at work, she was handed a shirt to pull on over her head. She couldn’t do it and, embarrassed, she asked us if anything could be done to restore her range of motion. It took eight weeks of targeted exercises but we got there. After that, every time we saw her she was dressed in a particular pullover. “It’s my favourite,” she told us. “I’ve been wanting to wear it for years. I’m so happy.”
Many people come to us simply wanting help in maintaining their ability to manage their homes. Their balance and strength may have deteriorated and they’ve become fearful of carrying out essential tasks such as putting out the washing or standing to cook a meal.
Each piece of specially adapted equipment in our gym can cost up to $20,000 but it can help restore their confidence and independence so if you’re doing your Steptember steps in a gym and wondering how to motivate people to sponsor you, it might help to reflect on that.
If you’re accumulating your steps on a bike – we need support to keep building our fleet of specially adapted cycles and if you’re doing them in the swimming pool, ours costs $140 an hour to run but it provides a platform that couldn’t be any more beneficial.
Many people with Cerebral Palsy live with fatigue, muscle tightness and pain as a constant companion but they rarely complain because it’s become their norm. It’s only when they are submerged in the warm water and able to extend their limbs, relax their muscles and no longer have to deal with gravity or a fear of falling that they get any relief. The joy on their faces at having a few moments pain free is amazing, especially if they spend most of their time sitting in a wheelchair.
Hydrotherapy programs build endurance, cardiovascular health and of course, a champion or two.
We had one young bloke who came in aided by his walker, barely able to swim without support. He was adamant he was going to learn, however, and a decade later he’s a medal-winning Australian champion. He comes back and demonstrates to other kids and inspires them too.
Of course, climbing onto the world stage is nothing new at the CPA. In 1945, when Neil and Audrie McLeod first set it up to support kids like their daughter Jennifer it was the first of its kind in Australia. Now our research institute is a world leader, not just working on treatments but also on a cure.
With more funds, who knows how many other ways we’ll find to stand at the top of the world?
If you haven’t signed up for Steptember 2018, it’s not too late.
To register your company’s support, and for more details on this worthy cause, visit www.steptember.org.au.
Your Steptember kit, consisting of a pedometer, lanyard and booklet, will be delivered right to your doorstep.
Every dollar you, or our company raises, will provide vital equipment, therapy and services to children and adults living with cerebral palsy. Or, you can choose to raise funds for ground-breaking research into the prevention and maybe even one day a cure.