Narcolepsy is a terrifying condition that can strike at any moment but sufferers like Kelly Spears are finding help from a surprising source, reports Steve Boggan
‘If I collapse, one nudge from a little wet nose will save me.’
There is something unsettling in the air – panicinducing, even – as Tricia Foster’s eyes roll back and she stops talking. Suddenly, I wonder if I am to be left here in her living room, sitting awkwardly on the sofa. Tricia has narcolepsy and I had wondered whether something like this might happen. Her attacks of sudden unconsciousness can be induced by stress or tiredness and my presence was likely to be the cause of one or both. She has no control over them and, when they come, the result can best be likened to a marionette falling as her strings are snipped.
“I think, erm…” she says, but nothing more.
Then something remarkable happens. Tricia’s miniature poodle, Dusty, who has been enjoying a sleep of his own next to her, suddenly leaps to his feet, barks and begins pawing her and burrowing into her armpit with his nose.
This is enough to bring Tricia round, though she looks exhausted before patting Dusty and saying, “Now, where were we?”
Tricia is one of an estimated three million people in the world to suffer
from narcolepsy to some degree or other. Its exact cause is not known, but it seems to be associated with an autoimmune response that results in damage to a tiny group of cells in the brain that control the production of a hormone called hypocretin that regulates sleep and appetite.
Those with severe symptoms may continually fall asleep throughout the day and be further debilitated by attacks of cataplexy, where they lose complete muscle function and fall to the floor, awake but unable to move. This is usually when they are overcome with emotion – fear, sadness or, cruellest of all, laughter.
Others may not randomly fall asleep but, in common with all sufferers, simply feel the dead weight of complete and utter exhaustion all the time because their condition prevents them from falling into the kind of quality sleep that healthy people need.
Theirs is a muchmisunderstood illness. Nobody would dream of laughing at a physically disabled person, yet the woman who falls asleep in her dinner is still the stuff of cinema mirth. This is something that Tricia does on an almost nightly basis and it isn’t funny at all.
Tricia is a no-nonsense 55-yearold whose energy might have moved mountains were it not for her narcolepsy. “I had a very good job at the naval dockyard in Rosyth, in Scotland, working in logistical support for the Navy,” she says. “Then in 1987 I was posted to the British High Commission in New Delhi as PA to the British defence adviser. I had my 30th birthday the following year and it was around that time that it all began to go wrong.
“My boss would come up to me and ask, ‘Is there a reason why there is a big gap in this piece of work?’ Apparently, I would appear to be awake and my hands would move across the page, taking down his words, but I would actually be asleep.”
Successive doctors told Tricia either to pull herself together, or that she had ME or some kind of virus. Eventually, her parents rescued her from what had become a lonely and frightening existence and took her to their home in Cumbria in north-west England. It was to be another year before she was formally diagnosed with narcolepsy but during that period she took comfort in something that amazed her.
“Nobody knew what was wrong and some doctors even dismissed me as a crank,” she says. “But my parents’ dogs, Ebony and Sunny, seemed to understand immediately.
“If I collapsed, they would protect me. It was a great comfort at a time of unfathomable distress.”
Nobody knows how dogs such as Dusty, Ebony and Sunny are able to tune in to the needs of narcoleptics and that might be why there is only one formally trained narcolepsy-assistance dog in the UK. (In the US there are more as Paws training centre there provides medial-alert dogs across the country to assist narcoleptic patients.) His name is Theo, he is a black cocker spaniel and he belongs to Kelly Sears, a 22-yearold student from Chadwell Heath in east London. Kelly was diagnosed with narcolepsy when she was about 15 but she had been displaying symptoms, falling asleep at school and having accidents, since she was 12. “When I have an attack I just drop. I don’t get any warning. I’ve burnt myself on hair straighteners, fallen down stairs, collapsed in shops and in the street, cut myself, banged my head, you name it. Once, a passing ambulance saw me have an attack in the street; they said I looked like a puppet having its strings cut.”
‘Nobody knew what was wrong with me… but my parents’ dogs seemed to understand immediately’
Three years ago Kelly’s mother heard about a charity called Medical Detection Dogs, which trained animals to warn sufferers of type 1 diabetes when their blood-
Spaniel Theo is the only formally trained narcolepsy-assistance dog in the UK
sugar levels were falling dangerously low. Research found they could smell the levels of sugar in their owners.
“My mum asked if they could help me and they said they’d take a look and see if they could come up with something,” says Kelly.
Medical Detection Dogs had never been asked to work with narcolepsy.
“A lot of our work is based on odours that dogs can detect from chemical changes that take place in our bodies,” says Simone Brainch, the charity’s client support manager.
“But in this case, we didn’t know what these chemical changes were – or if there were any.”
The charity had recently been given a spaniel pup that had demonstrated unusual levels of attentiveness towards a disabled member of the donor family. This was Theo. Months of training followed, at a cost of about £10,000 (almost Dh62,000)
The result for Kelly has been lifechanging. “I now regularly go out on my own because I know that if I have an attack, Theo will wake me up – he licks my face and barks or sits with me until I come round,” she says. “And I know that, whatever happens, he will protect me. There are some days when he can sense that I’m tired and likely to have a bad day, and he becomes very clingy. It’s a warning that I should stay at home.”
Word of Theo’s remarkable success – and even the care demonstrated by untrained family pets – is spreading through the narcolepsy community. Sufferers want to know what is making dogs behave this way, and how they can get one that might help them. “There is a lot of enthusiasm for the use of dogs,” says Rebecca Martyn, clinical psychologist at the Paediatric Sleep Disorders Clinic at the Evelina children’s hospital in central London. “We have peer support groups where patients help one another, and we began to hear stories in these of family dogs helping narcolepsy sufferers…
“I think we need some research here to see what it is that dogs pick up on. They could be enormously helpful in supporting people and giving them the confidence to go out and get on with their lives, getting into work and enjoying as normal a life as possible.”
If Kelly falls asleep, Theo has been trained to wake her up by licking her face or barking