Robots are changing the face of rehabilitation for people living with acquired brain injuries. A national charity is now hoping to bring this technology to Perth. For founder Trish Leonard, this cause is very close to home.
Click on the shaded words to hear Ms Leonard tell her story.
Trish Leonard was 24 when her mother, Damiana Martinet, was diagnosed with a brain tumour.
After post-surgery complications left Damiana with a brain stem stroke, Ms Leonard decided to give up her law career in Sydney and move back to Perth, where she and her father cared for Damiana full time for seven years.
“We essentially had no other option because there was no nursing home that wanted to accept her because of how severely disabled she was,” she says.
Damiana was almost completely paralysed and she was only able to communicate initially by blinking her left eye.
She required constant support and physiotherapy.
Ms Leonard says they set up their family home like an intensive care unit and ran it around the clock.
“She never got a break and we were there by her side,” she says.
Ms Leonard began to fundraise in order to afford medical equipment and therapy for Damiana.
She used the skills she had developed as a lawyer to advocate to Centrelink and the State and Federal Governments.
“They came together to give us a package where we were entitled to all the medical supplies and we got a few pieces of equipment funded as well,” she says.
With the support of a local charity, they were also able to pay for daily physical therapy and physiotherapy equipment, and Damiana’s quality of life began to improve.
“She was home for about one year and no longer was she having repeat chest infections, her skin integrity was great [and she] didn’t have anything like pressure sores,” Ms Leonard says.
As she continued to care for her mother, Ms Leonard began to research and she became captivated by the idea of neuro-rehabilitation.
“I developed an absolute fascination for understanding the brain and spinal cord’s recovery capacity and how you unlock that and make that work,” she says.
But she was frustrated with the gaps in Australia’s medical system.
“I’d understood the concept that when you’re gravely ill, you go into palliative care,” she says.
“It’s all end of life, and yet, when we left hospital, [Mum] was not in palliative care, she wasn’t dying.
“You’re in this state where something horrific has happened, you have this brain or spinal cord injury, and now you’ve got the rest of your life to lead.”
It was during this time that Ms Leonard first came across the use of robotics in neuro-rehabilitation.
She discovered that robots could assist patients to stand upright and participate in their therapy with dignity but, at the time, Ms Leonard was unable to raise the funds to give her mother access to such expensive technology.
She says many of the robots used in neuro-rehabilitation carry price tags of more than $150,000.
Damiana passed away in 2013, and Ms Leonard’s father soon afterwards.
Ms Leonard struggled to return to work as a lawyer and decided to commit to educating herself more about neuro-rehabilitation.
“I couldn’t give up this world that I had been part of seven years, learning all about neuro-rehab and neuro-recovery,” she says.
She spent nine months researching neuro-rehabilitation and making connections with professionals across Australia.
“I got to meet some really incredible people in the area of neuro-rehabilitation and from there it was decided that it was important that we start a charity in this area, and give neuro-rehabilitation a voice, and focus on new technologies,” Ms Leonard says.
In 2014, she founded the Australian Institute of Neuro-rehabilitation.
The charity and the robots
The Australian Institute of Neuro-rehabilitation is a national charity that aims to provide awareness and support to people who have suffered an acquired brain injury.
One of the charity’s biggest projects is based in the Hunter region of New South Wales, where they have funded a robot that is currently being used for neuro-rehabilitation in clinical trials and private practice.
“I may not have been able to do it for Mum, but [I thought:] why can’t we make this work for a whole community of people and be able to offer them access to therapy that way?” Ms Leonard says.
“Ultimately, through starting the Australian Institute of Neuro-rehabilitation, that was what we were able to do for a regional community in New South Wales.
“We purchased the first robot with the help of a very generous grant and some donations, and a lot of in-kind support, as well, and that’s where we were able to demonstrate that this is possible: the idea of a community being able to own a device and… benefit from individualised therapy.”
The robot, nicknamed HELLEN (Hunter’s Exoskeleton for Lower Limb Exercise and Neuro-rehabilitation), is an exoskeleton manufactured by the New Zealand company Rex Bionics.
The Rex Bionics exoskeleton is a self-supported robot that allows people undergoing neuro-rehabilitation to stand upright during their therapy.
It is the first of its kind in Australia.
In 2016, the AIN’s ambassador Emma Gee visited Rex Bionics’ headquarters in New Zealand to trial one of the robots herself.
“When I walk, I walk with a four-wheeled walking frame,” she says.
“I was shocked to think for the first time [in 13 years] I was walking without anything in front of me.”
Ms Gee was an occupational therapist working at the Royal Melbourne Hospital in stroke rehabilitation when she suffered a stroke herself.
She has since become an advocate and ambassador for stroke-related causes.
Having experienced neuro-rehabilitation as both a professional and a patient, Ms Gee says there is a lack of adequate support for stroke survivors.
“There’s so much emphasis on prevention and funding for that,” she says.
“There isn’t as much emphasis on relearning to do a lot of things and rehabilitation.”
She says that was why the AIN’s values resonated with her.
“Unfortunately, rehabilitation isn’t a very exciting, cute, or sexy area to work in but it’s definitely something that significantly impacts both the person and those around them, and there needs to be more awareness and funding to ensure people can continue to live really good lives,” Ms Gee says.
She emphasises the importance of the robotics the AIN is funding and says there are more than just physical benefits: the patients also benefit emotionally.
Trish Leonard says the use of such robotics in neuro-rehabilitation benefits the patient and the therapist.
“The robotics give people the opportunity of quality therapy: they can perform exercises safely, they can be upright and properly aligned [and there is a] reduced risk of falls,” she says.
“With a robot, unlike the fatigue you get with human beings, you can offer more intensive and repetitive exercises in a dosage that wouldn’t otherwise be physically possible for a therapist.”
She says the robots also make the experience less confronting and more comfortable for the patients.
“First and foremost, from the point of view of the person who’s going through rehab, it’s that dignity it gives you to be able to use technology, rather than having three or four people trying to physically hold you up,” Ms Leonard says.
“With that dignity, it becomes far more engaging and stimulating to be able to use a device.”
Director of pain services at Epworth Healthcare Stephen de Graaff joined the AIN board because he supports the charity’s dedication to improving peoples’ lives using these new technologies.
He says the use of robotics for neuro-rehabilitation is still an emerging area of treatment and it’s important that the AIN is promoting it.
“It’s an area that is under-utilised, under-developed, and anything we do to move forward in this area will be of benefit to our community,” Dr de Graaff says.
Listen to Dr Stephen de Graaff speak about working with Trish and the AIN.
Neuro-rehabilitation and robotics in Perth
The Australian Institute of Neuro-rehabilitation’s next goal is to fund an exoskeleton for use in Western Australia.
Once a new Rex Bionics exoskeleton is funded, Ms Leonard says the robot should be accessible to people across the Perth metropolitan area.
“These devices are actually quite movable,” she says.
“The exciting thing is if we had the technology [in Perth]… we could actually take the device to where it’s needed and share it between research and people at private therapy in the community.”
One of the facilities she has been in contact with about the project is Edith Cowan University’s Neuro-rehabilitation and Robotics Laboratory, where researchers are currently using a different sort of robot to conduct studies into neuro-rehabilitation.
Researchers Onno van der Groen and Manonita Ghosh are currently using a KINARM robot to measure participants’ sensory motor skills through their arm movements.
“We are testing whether eccentric exercise with non-affected, healthy arms will improve [the movement of the] affected, impaired arm in stroke patients,” Dr Ghosh says.
They use a variety of virtual reality games and exercises in the trials.
“In the device we have at the moment, you can’t see your arms and you have to do various tasks,” Dr van der Groen says.
“If you do it with your eyes open, you can see where your arm is and you can guide your movements.
“When you close your eyes, you have to completely rely on your tactile feedback.”
Unlike the Rex Bionics skeleton, the KINARM robot is not a therapeutic device.
It is only used for measurement and not neuro-rehabilitation.
Dr van der Groen says the addition of a Rex Bionics exoskeleton to the laboratory could have a significant impact on the local Perth community and beyond.
“There’s a large population in Perth, with many stroke survivors,” he says.
“So just for the local community, it would be excellent to have access to these kind of things.
“Then in Perth there is lots of research going on with neuro-rehab and Perth is also relatively close to Asia, so then it could be a hub for neuro-rehabilitation.”
The Neuro-rehabilitation and Robotics Laboratory also has strong ties to international institutions.
The laboratory was established earlier this year by Professor Dylan Edwards who is also the Director of the Moss Research and Rehabilitation Institute in the United States.
The Moss Research and Rehabilitation Institute is a world leader in advanced rehabilitation technologies.
It owns and operates 20 rehabilitation robots in total.
Dr Manonita Ghosh says neuro-rehabilitation and robotics are far more advanced in the US than in Australia.
Trish Leonard agrees and is heading there at the end of this year.
Back to books and beyond
Trish Leonard returned to university this year to study medicine.
She was awarded a full scholarship to Curtin University, where she has also founded the AIN’s first university Guild club.
When she first met Ms Leonard, president of the AIN Guild Club Leah Ayres knew nothing about neuro-rehabilitation.
She is now a passionate advocate for the cause.
“As a future health professional, I think it’s important to have an awareness about what the future is going to look like and how you can be involved in that,” she says.
Early this year, the club ran a stall and barbecue for Neuro-rehabilitation Awareness Day.
Ms Ayres says she hopes to expand their influence on campus into the future.
“We really want to focus on building a community of people that care,” she says.
Listen to Leah Ayres tell the story of how she first joined the Guild club and why people should know about neuro-rehabilitation.
Trish Leonard says the next step in her journey is a placement in America at the Kessler Institute for Rehabilitation, one of the top neuro-rehabilitation research centres in the United States.
“I’m going to have the amazing opportunity of going to visit them at a time when they’re training their professional staff in different technologies,” she says.
“So, I’ll be able to go over there and see best practice in action and bring my learning back here and look at how we can implement that through the AIN to try and make the best impact we can.”
Ms Leonard says all the work she does is ultimately because of her mum.
“It all comes back to that suffering that I saw, that we experienced firsthand,” she says.
“That’s what motivates me to keep going.”