After a rare disorder attacked his nervous system and robbed Kyle Tod of the slightest movement, he tells how he slowly rebuilt his life to the point where he is about to undertake an 850-mile charity cycle around Scotland.
Kyle Tod lay in his hospital bed, unable to move even the tiniest of muscles and with a plethora of tubes invading his motionless body.
Outside the high dependency unit at Edinburgh’s Western General Hospital, his devastated parents Des and Theresa were told to prepare for the worst. But what had happened to Kyle was not the result of an accident or a long-running battle with illness. Indeed, just the night before he had been enjoying the usual banter with his friends at five-a-side, recalling tales from their first ever lads’ holiday to Malia, Crete, days before.
How then had he found himself completely paralysed and fighting for his life in hospital? The answer was the rare, unpredictable and potentially fatal Guillain-Barré syndrome.
Kyle, now 25, recalls: “It was horrible, I could write a book about how horrible the illness was. I couldn’t move – I was petrified. I didn’t know what was facing me.
“Guillain-Barré syndrome normally affects people over weeks from being able to walk to being paralysed, but it happened to me in under a day.”
Kyle, who lives with his parents in Portobello, had felt light-headed when he woke for work the morning after playing football.
“The feeling didn’t go away and when I was at work, I was struggling to stand or do anything really,” he explains.
“I worked for my dad at the time and he sent me home. I went to my bed and my dad woke me up later on to go to the doctors. I believe he saved my life because if he hadn’t woken me up to go to the doctors, I would have probably died that night.
“My dad stood me up so I could get dressed to go to the doctors and I just collapsed. That’s when he realised there was something seriously not right.”
In August 2006, Kyle became one of the 1500 people a year in the UK to be diagnosed with Guillain-Barré syndrome. The disorder sees the body’s immune system attack part of the peripheral nervous system, damaging parts of nerves. This nerve damage causes tingling, muscle weakness and paralysis.
Kyle’s doctor had initially diagnosed the symptoms as a migraine, but his father Des, 63, pushed for a second opinion, which was given by staff at the Western General over the phone that day. Kyle, who had celebrated his 20th birthday just days before, was rushed to the hospital, where a wheelchair awaited him.
Kyle, who is now planning an 850-mile charity cycle around Scotland with his best friend to raise funds for the GBS Support Group charity, says: “I went from being a normal, fit person playing football the night before, to 24 hours later lying in a hospital bed and not being able to move a muscle.
“It was a shock. I did a lot of sport before and I was hoping to progress to being a professional football player, but I can’t do that now.
“Before the illness, I wasn’t an average Joe – I was quite fit. When I was ill, I was the thinnest I have ever been. I looked like a 15-year-old boy.”
Nearly six years on, Kyle has almost made a full recovery, although he still suffers from occasional muscle spasms. His fitness isn’t quite at the level it was before, and even a minor cold can knock him for six.
Following the shock diagnosis, he spent around six weeks receiving treatment at the Western General and another six weeks undergoing physiotherapy at the Astley Ainslie Hospital. He was completely paralysed for more than a week, after which he slowly began to regain movement of his muscles.
It was around three weeks before Kyle was able to sit up in his bed, and around two months before he could walk again. He says: “The doctors said I could potentially be in a wheelchair for the rest of my life, which scared me. They didn’t know what the outcome would be at the time.
“I had to remember how to move again. It’s much like going back to being a baby again and learning how to use your muscles. I’m 95 per cent there – I do play football now and I’m very close to being fully fit, but I’m not what I was before.” Kyle was unable to move the muscles in his face for more than four months, meaning he struggled to smile, frown or show any sort of facial expression.
His inability to express his emotions facially landed him in a few awkward situations, most notably at his friend’s 21st birthday party at the Opal Lounge. A group of women in bunny costumes enjoying a hen night had teased him about looking miserable, urging him to cheer up.
“It’s your friend’s 21st birthday party, why are you not smiling?”, they shouted. “I told them I couldn’t smile but they didn’t believe me – they thought I was at it,” Kyle recalls. It’s a story that, rather ironically, brings a smile to Kyle’s face now, six years after his nightmare first began.
He has spent the last few years trying to rebuild his life after the condition forced him to give up his job for a year. A builder to trade, he took over his father Des’ business – Portobello-based Tod Builders – in February 2010 after years of working for him.
It was a full year after his diagnosis before Kyle made a significant recovery, and more than two years before he played football again.
He was part of Ormiston Football Club’s squad for around five months in 2010, and has also enjoyed spells with Ryries Alba and the former Newton Heath, and is currently looking for a club to sign him.
In 2008, he started a youth team, Capital Star Football Club, to help keep under-17s off the streets, but he was unable to keep it going for longer than a season as he struggled with his health and fitness.
So what does the future hold for Kyle?
“I hope to be big in property development and I really want to get involved with helping other people with Guillain-Barré syndrome,” he says. “And I do still aspire to get picked up by a professional football club.”
• Temporary paralysis
GUILLAIN-Barré syndrome is a rare but serious condition of the peripheral nervous system, which controls the body’s senses and movement.
It is named after two of the three French doctors who first described the condition in 1916 – Georges Charles Guillain and Jean-Alexander Barré.
The immune system attacks these peripheral nerves, causing them to become inflamed and leading to a tingly, numbing sensation in the arms and legs. This can result in temporary paralysis. The exact cause of the syndrome is unclear and there is no way of identifying who is at risk.
In 2003, doctors concluded that former US president Franklin Roosevelt’s paralysis, long attributed to poliomyelitis, was actually Guillain-Barré syndrome. Former German football player Markus Babbel and former Celtic player Morten Wieghorst have also battled the disorder, as has veteran politician Tony Benn. In many cases, the person has had a viral or bacterial infection a few weeks beforehand, and it is likely that infection causes the immune system to attack the body’s nerves.
Guillain-Barré syndrome affects around 1500 people in the UK every year.
It is slightly more common in men than women, and can affect people of any age.
• The challenge
KYLE and best friend Ewan Maclennan, 29, from Colinton, will cycle 850 miles around Scotland in 12 days, starting and finishing in Edinburgh, to raise funds and awareness for the GBS Support Group.
The route will take them to Dundee, Aberdeen, Inverness, Tain, John O’Groats, Durness, Ullapool, Kyle of Lochalsh and Fort William, with the pair – who are calling themselves Challenge Duo – setting off on August 6 and staying in campsites along the way.
Kyle said: “I almost lost my life to the illness and I always wanted to do something.
“When I was diagnosed with Guillain-Barré syndrome, I didn’t know anything about it and if I had known about the GBS Support Group at the time, it could have helped me a lot.
“I want to raise as much as possible for the charity. If I survive this one, I plan to cycle to Hamburg and back next year.”
The pair are encouraging others to join them. To sponsor them, visit challengeduo.com