Among runners one moment a woman, collapsed on the ground and frothing at the mouth the next. For a short time she is lost to the convulsion and then she scrambles to her feet and sprints away. Katie Cooke will not let epilepsy get in the way of a race. The 19 year old student from Cherrywood South Dublin has what her specialist doctor calls “an arsenal of epilepsy, contends with 15 convulsions daily that makes her unconscious. Katie said, “her whole body shakes feeling her muscles jump, like everything has been sucked out of her so cannot breathe. So every single day she often loses control. Despite having to cope with multiple seizures, Cooke won prestigious events including her age group in the Dublin City Marathon and she runs 5km in under 17 minutes. She is often seen pounding the streets with her running partner, Dr Colin Doherty, who is her consultant neurologist. But she was not always so athletic.
Diagnosed at the age of nine with frontal lobe epilepsy, she managed condition with medication until it deteriorated when puberty hit and her hormones started “kicking up.”She was not able to get out of bed, unable to do anything for herself and could not really speak. My Mum was dressing and showering me,” she says. Cooke was admitted to Our Lady’s Children’s Hospital in Crumlin where she remained for 10 months. Despite being involved in numerous medical trials she regressed, lost control of her back and hips, and by the time she was discharged she wasn’t able to walk. And she could not hold herself up in a wheelchair for about seven months but being stubborn person wanted to prove to people what she could do. After a lot of physio started jogging every day and started to absolutely love the freedom.
Cooke now runs every day and says a missed session sees the tiredness and dizziness of her earlier condition return. Running only alleviates her symptoms, it has not been a cure. The raised heart rate brought on by running triggers more seizures than if she did not run, but Cooke says it improves her general well-being which is a negative worth accepting. Her neurologist, Dr Doherty, has weighed up the pros and cons from a medical perspective. “The particular challenges of having epilepsy and long-distance running are similar to walking challenges too and I think the general benefits outweigh these risks,” he says. “If you took the average long-distance runner and measured all their health parameters against someond who does not run you would find, no matter what disease or disorder they carry with them, they are better off.” So health conditions affected by starting exercise, it is always important to consult your doctor first.
Dr Colin Doherty explains epilepsy
The brain consists of about three billion cells and all of these cells are active, but they do not fire together, the brain is a de-synchronised machine. A signature of epilepsy is the cells fire together in a synchronised way. If a million cells fire together it causes a change in behaviour, when all three billion cells fire together that causes convulsion or a fit. There are about 40 distinct types of epilepsy. In some cases people will just stare blankly, others will wander around in a confused state and there are those who fall to the ground with convulsions. Competitive running was initially a non-starter for Cooke. As soon as she had a convulsion during a race paramedics withdraw her from the event, but a chance comment at one of her consultations led Doherty to offer himself as her running partner and he has kept her on track ever since. He says: “I’m a specialist in epilepsy but my sole role when running with Katie is to stop people from taking her off in an ambulance. I just stand there and say ‘Katie’s fine, I’m her doctor, she’s going to recover.” Despite Cooke’s seizures, the nature of her epilepsy means her body does not require lengthy recovery time, she is able to immediately get up and run again. Doherty believes it is her fitness levels which help with recovery.
Hear more from Katie and Colin
Listen to the BBC Ouch talk-show to find out more about Katie Cooke, Dr Colin Doherty and their running partnership. “Katie is a very serious runner, and she trains properly. I’m very confident that this is a really positive experience for her,” he says. As well as sport, college, Cooke also has to navigate a social life and relationship with partner Jack, a role most daunting at night when Cooke’s seizure’s make her scream, thrash around and cause the bed to shake and shudder. Cooke says: “He’s one of the most chilled people I know and he sleeps through my seizures which is a bit weird. He wakes up for the odd one because some are quite violent and was slapped in the face before, but he just falls asleep again.” In terms of intimacy Cooke says sex does not trigger seizures, although a fit can occur at such times, and women report an increase in convulsions around the time of ovulation and their period.
Her nightime seizures are accompanied by hallucinations of a shadowy man who she says “comes for her” and it is these which leave her most exhausted. She does not sleep well at all,” she says. Her education suffered and she missed the majority of secondary school. Despite that, she managed to cram three years worth of curriculum for the Irish Leaving Certificate into one year, secured a place at college to study sports management. Doherty calls her a “remarkable young woman” for all she has achieved while handling so many severe convulsions on a daily basis. When people watch Katie drop to the floor mid-run it is alarming but Doherty believes being public about it will help others with the condition. So there is need to facilitate people to live a normal life as possible and they need to be encouraged to do everything, he says. The biggest barrier is not the safety issue but the perceptions of other people.”
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