Seizure dog may be the answer for woman with history of seizures

The seizures are bad, hitting hard enough to knock her to the ground — helpless until someone arrives or she can gather her senses. But worse, says Heidi Lee Dias, is never knowing when the next one will hit, or where. Sometimes days will pass without one, “but yesterday I had two ... I had three last week.” It has happened when she was on the stairs and when she was out in town.
“There’s never a good time or place but some places are really bad,” she said. “It’s really scares me and it worries my family all the time.”

The seizures have dominated her life since she suffered a stroke out of the blue seven years ago at age 29. She had undergone a doctor-recommended hysterectomy and was recovering in the hospital two days later when it hit.

“At first I could hardly do anything. I couldn’t talk — the only word I could say for awhile was ‘no.’”
Can dogs sense a seizure?

Although there is no question that trained dogs can assist people with disabilities in many ways, there is lively debate among scientists, epilepsy groups and even dog trainers over whether dogs can actually sense a seizure coming.

The Epilepsy Foundation states: Some dogs “may even be able to sense in advance when someone they’re close to is going to have an epileptic seizure. America’s interest in seizure dogs began in the mid-1980s, when a woman with epilepsy who was taking part in a ... project involving dogs discovered that one of the dogs seemed to know when she was going to have a seizure. The news media picked up the story, and the phrase “seizure dogs” was born. The Lifetime television drama, “Within These Walls,” is based in part on this experience.”

But at Epilepsy.com, veterinarian Deborah Dalziel says: “There is this misconception that any seizure dog can be trained to alert, which just isn’t true. A dog can cue in on minute behavioral differences, but can’t be trained to alert.”

In a 1998 study of 29 epilepsy patients, nine reported that their dogs responded to a seizure. These dogs remained close to their human companions, either standing or lying alongside them, sometimes licking the person’s face or hands during and immediately after the seizure. Of the nine dogs reported to respond, three were reported to also alert their human companion to an impending seizure.

Some believe the dog is able to alert by detecting subtle changes in human behavior, while others assert that a dog’s heightened sense of smell enables it to detect an oncoming seizure. “I think a lot of it is that people give off cues and dogs are more alert to body language,” said Mike Sapp of Paws With A Cause. “But there haven’t been enough scientific studies done.”

Gradually her strength and speech returned but there are still good days and bad.

Telling her story last week, she spoke clearly about what she’d endured.
“But some days I can hardly say a thing. My daughter can always understand me but sometimes she’s the only one.”

It’s the same with her strength. Her right side is weakened but she can usually get about reasonably well, except on the bad days. Or when a seizure strikes.

Veteran, EMT, now housebound

All this is quite a change for a young woman who had set a career path of helping others. After high school in Fall River she entered the Navy and was shipped off to serve in Operation Desert Storm when her daughter Bianca Lee Cardoza, now a senior at Westport High School, was but nine months old.

During the war she was among a special few selected to be a Marine Corpsman, tending to wounded soldiers. Back home she continued that line of work, becoming an EMT for private ambulance services.

“It was work I really liked,” she said. “I miss it, I was doing something important.”
These days the tables have turned. Since the stroke, she can’t work, can’t drive, can’t go out without fear of the seizures for which doctors can forecast no end.

She’s 36 now and gets help from her daughter, husband George Dias and daughter-in-law Kayla Dias.

“They are great about it (the experience has even played a part in guiding her daughter toward a career in nursing or similar field). But I know it’s hard on them, someone calling me every 10 minutes to make sure I’m all right.”

“I just want my life back, to be able to go places without being afraid of what might happen.”
It has been heart-wrenching to see the changes in her daughter, said Heidi’s mother Sandra Amarello who lives in Florida but makes trips north to help out.

“She went from a very outgoing, active person who loved to play sports outside with her daughter to someone who is afraid to leave her house,” Ms. Amarello said. “She doesn’t like to go out to her mailbox alone ... one time she had a seizure right out there in Route 177.” And whereas she used to take care of her daughter, “now it’s the other way around. Her daughter does so much for her.”

Seizure dog

Awhile back, Heidi learned from doctors about something that might help.

“I had never heard of seizure dogs before so I looked it up on the internet.” There she found a wealth of information about special dogs trained to help owners who suffer from seizures, dogs that can perhaps even alert them before the seizure hits.

Her research led her to Northern Indiana Service Dogs, a firm that trains dogs for the specific and varying needs of clients. Some are companions and helpers for wheelchair-bound and partially paralyzed people, and others are trained as seizure response dogs.

Ms. Dias is especially hopeful about the possibility that some seizure response dogs may actually sense the onset of a seizure before it begins.

“It may be something to do with their sense of smell, or with the fact that they know their companions so well but they can actually give warning before it starts.” This, she adds, would make all the difference and offer a measure of protection from falls or worse.

Northern Indiana Service Dogs makes no assurances along these lines:
“There is no guarantee that a seizure response dog can predict a seizure. However, we would expect that in time, and after bonding ... they will notice oncoming seizures and will alert you to them.”

The firm does say the dogs are trained to assist with balance, retrieve dropped or out-of-reach objects, open doors and even bring a phone to a fallen person.

Although she hasn’t yet raised anything close to the $5,000 she’ll need for her dog (actual cost is higher but a donor program provides some assistance) she has begun the process. Stevie, a yellow lab puppy, has begun training for her specific needs and will be available in several months.
She says she calls the trainers often to find out how it’s going.

“They say he’s going to be wonderful. I can’t wait to meet him,” she added.

Want to help?

A fund to help Heidi Dias with the cost of her assist dog has been set up through a restricted Bank of America account. Checks, made out to the Heidi L. Dias & Service Dog Fund may be sent to Sandra Amarello (trustee), 4 Lawtons Lane, Westport MA 02790. Under terms of the account, funds will be dispersed for the dog’s purchase and related expenses including transportation to and from Indiana.