Life-sav­ing dogs

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

Friday - - Contents -

‘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

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