Hornchurch gym instructor: ‘I had to disable half my brain to live again’
PUBLISHED: 12:00 19 October 2014
At the age of 18, Lewis Unwin had a drastic decision to make. Should he undergo surgery that would disable half of his brain, but could help overcome a rare brain condition he’d developed at 15 and that caused seizures 24 hours a day?
n The condition is usually diagnosed in children between the ages of three and 11.
n The cause of the condition is unknown but the brain cells of sufferers become swollen and inflamed in one half of the brain.
n Frequent epileptic seizures occur because of the swollen nerve cells and in more severe cases, such as Lewis’s situation, they happen continuously.
n After a period of time with the condition, individuals tend to develop a weakness down one side of the body know as hemiplegia.
n Steroids are often used as treatment as is a balance of epilepsy drugs but in some cases surgery to remove a portion of the brain can be a cure.
The prospect of such an operation understandably caused much worry to Lewis, of Suttons Lane, Hornchurch. However, he bravely went ahead with it and now, at 21, he is studying to work with disabled people as a personal trainer.
The Recorder spoke to Lewis about his inspirational story.
Before his diagnosis, Lewis was an ordinary, sports-mad 15-year-old. “I loved sport and I was boxing and playing football daily,” Lewis says.
“That all changed when I went on a family holiday and started getting twitches on my face. Soon after the holiday my speech began to deteriorate and my arms and legs would shake. I also started having seizures.”
On his return, doctors told him he had Rasmussen’s encephalitis – a chronic condition that causes swelling to one side of the brain.
He was treated at Great Ormond Street Hospital but unfortunately the drugs he was given came with side effects. Not only was he gaining weight and unable to sleep but was still suffering from epileptic seizures that, at their worst, would cause the left-hand side of his body to twitch constantly.
So, at 18, Lewis made a choice he felt “was the only way forward”. He opted to have a hemispherectomy – the surgical disconnection of half his brain.
“I was really scared about the operation but knew that it was the only option for me to help reduce the seizures and allow me to have a far more normal life,” he recalls.
n A hemispherectomy is a very rare surgical procedure where one half of the brain is removed or disabled. It is considered the most invasive surgery in use today.
n First used on a human in 1923, the operation physically removed half the brain. But this caused severe side effects so today the procedure involves disconnecting parts of the brain.
n The operation is almost exclusively carried out on children. This is because their brains more readily adapt to the dramatic change. The nerve cells in the remaining half can form new connections to take over from the tasks previously handled in the removed portion.
n Scientific research showed nearly 75 per cent of those who have the surgery are seizure free afterwards and that it is rare for brain function to decrease.
n More recent studies have found that the procedure can be successful in adults too.
“I knew I’d still have challenges after the operation but at least I could do things I loved again, finish my education and start looking towards a career in fitness.”
The operation left him with slurred speech and unable to work so the former pupil of Sanders School, in Suttons Lane, Hornchurch, spent three months relearning basic skills at a rehab centre
After making a promising recovery, Lewis started InstructAbility – a fitness training course run by YMCAfit that helps people with disabilities become fitness instructors.
During his course he undertook a 12-week placement at Central Park Leisure Centre, in Gooshays Drive, Harold Hill.
“It feels great working with other people with disabilities, helping them get active and feel comfortable in the gym. I understand what they’re going through,” Lewis says.
“I still have challenges of my own, including weaknesses down the left-hand side of my body, meaning I have to adapt to everyday activities.
“I also tire quite easily so I have to pace myself. But I won’t let this hold me back and I am continuing to volunteer at the centre to help me achieve my goal of becoming a personal trainer.”