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Wednesday, 20 March 2019 08:56 am

Dogs assist those living with epilepsy

Jen Gilbert-Potts (left) and Nina Gellert with Val the dog

You’re home alone. You wake to find your pillow covered in blood. You head to the bathroom to wash the blood from your hair only to discover the bathroom is covered in blood too. What happened? Where did it happen? What is going on?

It’s not a C grade thriller. It happened to 16-year-old Nina Gellert the last time she had a seizure.

Nina has epilepsy. She’s also a typical teenager. She loves sleeping, food and hanging out with her friends.  Meeting Nina, nothing indicates she’s any different from any other kid her age, apart from one thing—she has a four-legged constant companion named Val.

Val is a three-and-a-half-year-old black labrador, and a great guard dog. No one can step one foot onto the property without Val letting her family know. But Val’s all noise really. The moment the front door opens, she is eager to greet and get a good sniff. After the excitement of meeting a new human wears off, Val becomes a black shadow of either Nina or Jen (Nina’s mum) , depending who is closest.

New Zealand Epilepsy Assist Dog Trust

Val is one of 15 epilepsy assist dogs around the country. The New Zealand Epilepsy Assist Dog Trust was set up by Andrea Hawkless in 2000 after her son died as the result of a seizure. Andrea believed that if a dog had been with her son at the time, he may have lived.

New Zealand is the third country behind Great Britian and America to offer assistance dogs to people with epilepsy, and Nina is the youngest person to receive an assistance dog.

Jen discovered her daughter had epilepsy at just two years old after Nina had a complex partial seizure while having her face painted at playcentre. “She suddenly got off the face-painter’s lap, where she’d been sitting quite happily, and walked off. She then looked around really dazed and confused and didn’t quite know what was happening.”

Jen rang the doctor when they got home and Nina was quickly diagnosed with the neurological disorder.

After trying different combinations and doses of drugs, Nina’s seizures were pretty well under control by the time she was five. But then, at age eight she had a single convulsion and three months later they started coming hard and fast.

“It’s horrible. You never get used to it,” says Jen.

Nina pipes up: “I’m used to it.”

She recounts the time three ambulances were at the house because she’d stopped breathing. Nina talks with no sense of drama about the seriousness of the situation. Rather, she offers the story as another inconvenience that epilepsy causes her. Like not being able to go for her drivers licence at 16 like all her friends. Legally Nina must be seizure-free for a year before she can drive.

“I’m going to learn to ride a motorbike, just because my parents disapprove.”

The power of Val

Nina and Val are inseparable

Val has a lot to do with Nina’s sense of acceptance and chirpiness. A year before Nina got Val, she was having convulsions every two weeks, but now she’s gone as long as 11 weeks without a seizure. Nina is a firm believer that pets lower your blood pressure. “But she also calms my brain, so my brain’s not whizzing round.”

Her mum heard about New Zealand Epilepsy Assist Dog Trust when Nina was 11. They went through the application process and waited four years to be matched to an assist dog. Nina was a little disappointed at first because she thought she was getting a golden retriever, but it only took a month for Val to steal Nina’s heart. “You’re way better than a retriever,” she tells Val, in that voice all dog lovers use. Val sits attentively on the mat by Nina, soaking in the praise and affection.

The love between girl and dog is evident. The first thing Nina shared was that she and her school friends have invented a religion called Dogology with Val as their queen. As an official assist dog, Val goes to school with Nina, sitting by her desk during the day, and often running around the gym during P.E. “ Everyone else is exercising, she should too,” Nina laughs.

Val’s job is not simply to be adored by everyone. Assist dogs have important responsibilities too. Val is still training and has yet to be fully certified, but she has learnt to bring Nina the phone, a blanket and a water bottle. Val must also learn to stay next to Nina when she has a seizure and warn people. “At the moment her warning is to run out of my room and run around the house freaking out,” Nina grins. “I guess it’s kind of a warning,it’s not the one we wanted,but it’s a warning.”

As a parent there are benefits for Jen. She has a lot less anxiety and Nina can be left home alone more. What teenager doesn’t want to have the house to themselves sometimes? Nina’s little flickery moments while out in public are now less stressful for Jen. “She seems a lot calmer and more alert with Val around and Val is trained to keep an eye on slightly odd behaviour,” says Jen.

Every dog is different

Epilepsy Assist Dog Trust member Jan McEwen says every assist dog is different in what they learn and how long they take to train. Some dogs come from the Blind Foundation who have strict training requirements. However Jan is quick to add they don’t want to label them as cast-offs.

“A lot of people think that the dogs are going to alert them to a seizure, and that’s something you can’t train. It just happens in some cases. It depends on the bond and the dog and the client,” say Jan.

One such bond between client and dog is 37-year-old Kate Hendra and her five-year-old golden retriever, Roxie. Kate cannot always tell if a seizure is coming, but she’s sure Roxie can. Roxie will hang around “like a bad smell”, and then about an hour later the seizure takes hold of Kate’s body, throwing her to the floor. She wonders if Roxie can taste it on her skin or smell something different when a seizure is coming.

It’s then that Roxie proves her worth. Roxie’s first job is to remove Kate’s glasses from her face, putting them in a safe place so they can’t get broken. “I’ve broken so many pairs of glasses,” Kate admits. “And then she squishes her body under my head so I don’t bang my head on a table, like this.” Kate demonstrates the movement her head goes through when she’s seizing. “And then Roxie will bark.”

Kate Hendra and Roxie the wonderdog

Kate can’t stop looking at Roxie and giving her affection. Roxie appears happy to receive both the physical contact and the verbal praise.

Kate’s first epileptic seizure came minutes out of the womb. Her mum had epilepsy, but it disappeared when she became pregnant with Kate, her first child. Kate is the eldest of three girls and has to watch as her two younger sisters raise their kids. She has a quiver in her voice and the sadness in her eyes, when talking about kids. While Kate loves her nieces and nephews and proudly claims the ‘cool aunty’ label, she still hopes that she might have her own children one day.

She married her long time partner Tyson a couple of months ago and they decided to wait until her health is a lot better than it currently is. There’s no guarantees Kate’s epilepsy will disappear with pregnancy. Simple tasks like changing nappies and bath time become potentially dangerous situations without he neccessary precautions. Kate’s thought through the solutions already.

Like Nina, Kate’s epilepsy cannot be fully controlled by medication. That’s one of the criteria for assist dog eligibility. Her seizures are frequent, at least one or two a week. A couple of weeks ago she had eight in two days. You can almost hear the tiredness in her voice. Kate has grand mal seizures, “full-on, fall to the floor, start shaking around”.

Unlike Nina, the frequency of Kate’s seizures hasn’t changed, but Roxie has made a difference. Kate was unemployed with no desire to leave the house. “I was scared to go walking even just by myself in case I’d end up having a seizure and I’d be embarrased from people. But now I’ve got her, she’s given me so much confidence it’s not funny.”

That confidence has translated into a full-time sole charge job at a local shop. Kate would walk down to the shop with Roxie to get Tyson’s smokes, and Roxie bonded with Harry, the owner’s schnauzer. “I ended up asking him one day if he had any work.”

The reality of epilepsy

Kate ponders the difference Roxie has made: “I think she’s made me more upbeat. I’m a lot happier and not so down. I tried to not let it get the best of me, but it did.

“And since I’ve got Roxie, she’s um…” Kate pauses, as emotions surface, “…she’s just amazing.”

Kate’s spent most of her life embarrassed by her epilepsy. “High school and intermediate were horrible. I hated them. Everyone would tease you.”  I tell Kate about Nina and Val. “Does she take [her dog] to school with her?” she asks.

As Kate talks, Roxie wanders around the lounge, sitting still for a while before coming back to ensure she is part of the conversation too. “C’mon then, up you hop.”  Roxie awkwardly clambers onto Kate’s lap on the lazyboy chair. She’s not a small dog and Kate is lost amongst the blonde fur. “As you can see, she’s a big softie.”

Kate admits for a while she didn’t always handle things well. When she was about 19, she still drank. “It was stupid but I look at it like, I just wanted to be a normal person. And I faced the consequences.” An instant trigger for Kate is strobe lights. Kate would chuck on her mate’s sunglasses in nightclubs and keep as far from the lights as she could. “But drinking, I knew I’d pay for it by having a seziure the next day.”

Nightclub lighting isn’t an issue these days. Husband Tyson calls her a nana, but Kate says she’s just an early bird. Up at 5:30am every day, she’ll be in bed at 8:30pm. She does her best to avoid tiredness and stress which is her biggest trigger.

Kate says there’s only one disadvantage with Roxie. If she and Tyson want to spend time by themselves, it’s not always easy to get someone to look after Roxie. “She’s not just a normal dog. We would never just leave her outside.” The investment into dogs like Roxie is thousands of dollars.

Kate and Roxie with John Key, former patron of the Epilepsy Assist Dog Trust

Both Val and Roxie wear special coats to show they are epilepsy assist dogs. This entitles them to enter any public space, and travel on planes. Nina and Kate carry identification cards that have a photo of both themselves and their dog. On the other side are key points of the legal act, so they can show people the dogs are legally allowed to be there.

Small but significant

The New Zealand Epilepsy Assist Dog Trust  is small, with a team of volunteers like Jan McEwen making it all happen. She recounts story after story. “It’s amazing how the dogs do change their lives and it changes their personality. They just get so much more confidence, you know, socially it’s better for them.”

The trust is currently training two dogs. One is about to be placed with a lady and the other; well, he’s  got some “converting” to do having come from the bomb squad. “They have to be converted because they’re trained not to put anything in their mouth. We have to retrain them to do that because we might want them to carry a phone or take something.” There are three people on the waiting list and Jan says they get a lot more applications than people who get accepted.

The cost for providing assist dogs depends on where the dog comes from and the length of time it takes to be trained. The trust receives no government funding, so totally relies on grants, private trust and donations from the public. They cover the cost of training, travel, coats, food and other general equipment dogs require.

Dogs have long been known to be great companions for people. The saying “Man’s best friend” captures something of the special relationships that form between a person and their dog.

For Nina and Val, Kate and Roxie, this bond is literally changing their lives. The dogs have enabled them to live a fuller life, to let go of fears and the stigma of seizures, and to feel that unconditional love every day.

And for once internet memes have got it right with their definition of a dog.

Dog (noun.)

  1. The best friend you will ever have. A loyal, loving companion that cares for you more than himself. A special creature whose time in your heart will far outnumber its days on earth.

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