In 2018, Terry Lewis’ life was devastated by an accident at work. This initially left him with a serious but, he thought, manageable back injury. A few months later the true cataclysmic impact of his injury was revealed when he became a paraplegic and was confined to a wheelchair. Aside from the obvious physical limitations and challenges of having an SCI, the emotional toll on Terry and his family was also huge. Then he joined our eWALK neurostimulation trial. This is his story.
Meet Terry
Prior to sustaining an SCI in 2018, Terry’s life was always on the go. He was running a successful engineering business and had a busy family life with his wife Ellen and two children, Ben and Ashley. Unlike other SCI’s which are more immediate, Terry’s happened progressively after hurting his back at work in February 2018.
“At the time, I knew that I’d done damage to my back and had injured it in some way, but I didn’t understand the severity of my injury. Also, when you own your own business and are the main provider for the family you feel like you have to keep going to keep things running,” he explained.
So, Terry continued working. However, the symptoms from his injury steadily got worse over several months. “I was losing strength in my left leg and my left foot started to drop. So, when I was walking, my left foot was basically slapping on the ground. Then, it wasn’t until I went to get into my ute to go to work one day, I tried to step into the ute and I couldn’t lift my left leg up to get in. That’s when it dawned on me that something serious was happening,” he said.
Realising the devastating impact of SCI
From that point, everything moved quickly. Terry was rushed to hospital and had surgery on his back. When he woke up, he was a paraplegic.
“After the operation, I felt no sensation from the waist down. This meant that I had to be hoisted out of bed and I couldn’t even sit up as I had no core strength. So, I knew that something drastic had happened,” he added.
Terry was in hospital for seven weeks following his injury, in intensive care. However, he said it wasn’t until he was transferred to the rehabilitation unit at Prince of Wales Hospital that the gravity of having an SCI really dawned on him.
“When I was in hospital, I always had the thought that I was going to get better and walk out. And then, when I was in rehab, one of the physiotherapists explained to me, quite frankly, that my injury was so severe that I nearly had a complete SCI. So unfortunately, just getting up and walking out wasn’t going to be an option.”
The ‘iceberg’ of SCI symptoms
“A lot of people think that having a SCI involves not being able to walk and move your legs. But there’s so much more that happens – that’s just the tip of the iceberg,” said Terry.
As Terry’s injury is between T9 and T10 in his vertebrae (which is slightly above his belly button level), everything else below this area is affected. This means that Terry experiences devastating symptoms like bowel and bladder control issues, making daily living a struggle at times.
“I have to be very careful about what I eat and make sure I eat a balanced diet and manage my fibre intake otherwise I am also dealing with bowel issues, often leading to other complications like infections,” he explained.
“I also have to watch out for sores developing on my legs and backside. As there is no feeling or sensation below my waist, sometimes I don’t even know when they are there.”
The emotional toll on relationships and family
According to Terry, the impact of his SCI on the family unit was immediate.
“When it first happened, I could start to see the domino effect that my injury had on everybody else in the family. Then, as time goes by, you start to see the impact compound,” he said.
It also put pressure on his relationship with Ellen, who was instantly thrust into the role as sole provider for the family whilst a decision awaited from Terry’s insurance provider regarding compensation for his injury. This process took around two months.
“Because of my injury, the family had to rely on Ellen to work to keep us financially viable. At the time, Ashley was a second-year uni student doing her Nursing degree so it was important for Ellen to support her too. So, she was very much the glue holding the family together, while also trying to be there for me and making sure I was ok in hospital,” he continued.
“For a long time, relationship-wise I think we were just surviving. We would just go through the motions of getting through things.”
Terry’s wife Ellen also recalls the initial impact that Terry’s SCI had on the family.
“My initial reaction was just not accepting what was really happening,” she explained. “Both my son, daughter and myself would talk about Terry’s injury as though he would in time make a full recovery, which I think at the time was the best way for us all to cope and not fall in some sort of depression, however, I feel that all four of us had our moments when we tried to hide our feelings from each other, to hold each other up and stay positive. I also feel looking back that if Terry wasn’t the strong, positive person that he is, we as a family and extended family would not have coped as well as we did”.
According to Ellen, the best piece of advice that she got early-on was from a doctor who told her that she should still view her relationship with Terry as a partner, not a carer, and to try and keep things as normal as possible. A big part of this was maintaining her position as a teacher at TAFE, something she said helped to normalise the situation and take her mind off Terry’s injury for periods of time during the day while she was at work.
“This was really the best advice that I ever got as it really gave me permission to do what I thought was right. And, as my income was now the sole income for the household, it would mean that Terry wouldn’t need to worry about the financial side of things while he was in hospital,” she added.
Even today, Ellen still grapples with the many changes and hardships that come with being a partner to someone with an SCI.
“I think the biggest thing for me was the huge role reversal shift that happened when Terry got his injury. Terry’s always done everything for himself and has always been the fixer and the doer and then suddenly I had to take on this role, while also being strong for Terry,” she continued.
She said that navigating life socially with a partner in a wheelchair still has its challenges, with so many things to consider before going anywhere like access, parking and if the places they are going to have disabled bathrooms.
“My biggest piece of advice to a partner or spouse of someone with an SCI is not to isolate yourself from friends because it can become a bit isolating and you think you can’t get into certain places or get in somewhere. Or sometimes you just don’t go out at all because it’s too scary,” added Ellen.
“It’s a self-confidence thing on both sides. When you turn up somewhere in a wheelchair you just have to be confident that it’s going to be ok and that you’re meant to be there as well, even if you are in a wheelchair. For the partner, you have to be strong for the person in the wheelchair, even if you’re scared inside.”
Life after hospital and rehab
After spending three months in rehabilitation at Prince of Wales Hospital, Terry returned home, which he found daunting at first.
“Being in rehab was a godsend as you have the physios, the occupational therapists, the nurses, the doctors and other patients there who are going through the same thing as you and, together, you learn how to live with your SCI. The thought of going from a full-time care scenario like that to coming home was scary,” Terry said.
Eventually he adjusted to his new norm. He began attending Prince of Wales as an outpatient and started seeing a physiotherapist there twice a week. It was there, in 2022, that he found out about the eWALK trial and was introduced to a Project Spark researcher at NeuroScience Australia (NeuRA). Things moved quickly and, two months later, he joined the trial in Sydney based at the Spinal Cord Injury Research Centre (SCIRC) at NeuRA.
Terry’s eWALK experience
“I was really excited to be involved with the trial and to have the opportunity to participate. I also really wanted to help with the research, and also learn more and hopefully get some takeaways from the physiotherapy aspects of the research,” explained Terry.
The trial involved Terry doing 30 minutes of walking three times a week for 12 weeks, harnessed on a treadmill. He received neurostimulation treatment in his sessions, which was delivered by electrodes placed on his skin*. Prior to starting the trial, Terry had no knowledge about neurostimulation and the potential benefits that it may have as a treatment option for SCI.
“Initially when they put the electrodes on and then switch it on, it feels like a tingle, but it only lasts a couple of minutes. Then your body sort of switches off from it,” Terry explained.
Terry was also motivated to join the trial because it offered him a challenge both physically and mentally, giving him a huge sense of achievement after completing it.
The physical and mental benefits
Overall, Terry made immense physical strides on eWALK. Before joining the trial, Terry had limited movement in his legs and could only take a few steps with the assistance of a walking frame, his weight heavily supported by a physiotherapist. However, in his last session in week 12, he was able to up this to 120 metres only assisted by a light walking frame and a velcro belt with a handle on it held by the researchers, with very minimal support.
“I definitely felt stronger,” added Terry. “My speed and endurance also got better and better as the weeks went by. So much so, I would say my walking pace increased by about 25 per cent all in all.”
The mental health aspect of participating in eWALK for Terry was also huge – particularly as he took part shortly after NSW started to open up again following the COVID-19 lockdown in 2021.
“Any sort of exercise therapy is so important for people with an SCI as it keeps your head in the right spot and prevents you from slipping sideways or sliding down,” he explained.
“Having a regular commitment to go to every week and showing up for the trial also gave me a sense of purpose and it was great to be able to share my experiences and achievements from the trial with friends and family.”
Even post-trial the benefits continue to emanate for Terry, even to this day. As part of his weekly exercise regime, he does a weekly session with his physiotherapist where they concentrate on his gait and walking training. In those sessions, he can walk up to 160 metres using shorter armed ‘Canadian’ crutches.
“Overall, I’ve been really happy with my progress and what I’ve been able to achieve. Participating in the trial really showed me that I could gain improvements years down the track from getting my injury,” he continued.
So much so, Terry recently signed up for the SpinalCure-supported eWALK2 trial** and hopes to commence in early 2025.
A cure for SCI: not a matter of ‘if’ but a matter of ‘when’
“When I first started on the trial, the researchers shared their mantra with me – which was it’s not a matter of if we find a cure, it’s a matter of when. This really stood out for me and gave me hope,” said Terry.
According to Terry, the work that SpinalCure is doing in terms of raising funds for cure-focused SCI research is fundamental to achieving this.
“There’s so much that goes into the treatment and care of a patient with a SCI. They need so much assistance, they need care and the burden of cost on society is astronomical,” he continued.
“If we can get more funding going into research, rather than just treatment and care, it’s going to make a huge difference.”
Speeding up the pace of the research and funding more SCI projects is also vital – something that can only be achieved by more support from corporates, philanthropists and government.
“Even just finding ways to make our lives easier on a day-to-day basis and dealing with some of the difficulties that we have to deal with would be excellent. Challenges like the bowel and bladder issues – helping or curing even some of these would be a huge milestone for someone living with an SCI,” Terry said. “These will be some of the truly life-changing steps taken on the road to a cure.”
With Terry’s family expanding this year with the arrival of his first grandchild Maya, now six months old, he said that finding a cure is more important to him than ever.
“I’ve got a daughter who I want to be able to walk down the aisle one day. At my son’s wedding, I want to be able to dance with my wife, and dance with my son’s partner. I’ve also got a little granddaughter now who I want to be able to take to the beach for a swim,” he continued.
“Of course, a cure would mean so much for me in terms of alleviating the many health issues and symptoms that I experience on a daily basis. But, having the opportunity to walk again one day and experience these special moments with my family would mean the world to me.”
*Important information: eWALK is a rigorous double blinded sham controlled clinical trial. Every volunteer receives 12 weeks of intensive exercise therapy. However, volunteers and scientists do not know whether a volunteer is receiving real or sham stimulation. This information will be available when eWALK results are finalised, which is anticipated to be in 2025.
**The eWALK2 trial will test neurostimulation’s ability to rewire neural pathways using electrical impulses delivered through skin electrodes on the spinal cord. An extension of NeuRA’s first eWALK trial, it combines this treatment with 12 weeks of intensive step and walking training, targeting both incomplete paraplegics and quadriplegics.