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Epilepsy Ontario stories to open discussions

April 5, 2012

News program an exciting avenue for people to share stories: EO executive director
Deron Hamel

If you ask Epilepsy Ontario executive director Rozalyn Werner-Arcé what the most exciting aspect of the organization’s new online news program is, her answer is straightforward: “We’re providing a way for people with epilepsy to tell their stories.”

Through the news program, which went live March 13, Werner-Arcé says she wants to see conversations open up within Ontario’s epilepsy community about some of the main issues that need to be addressed for people affected by the neurological disorder.

These include the need for improved access to health care and disability and employment supports.

“I want to tell the good-news stories, I want to (see discussions) about the struggles that people face, and have it done in a way that can help move solutions forward,” she says.

With more stories available in the public domain about the issues people who have epilepsy face, as well as people’s accomplishments and possible solutions to challenges, Werner-Arcé says the best thing that could happen would be increased awareness and education about seizure disorders, coupled with new opportunities for people who have epilepsy.

Considering about one per cent of Canadians have epilepsy, this is an important focus.

To date, four stories have been published on the Epilepsy Ontario website. Coupled with the once per week publication of stories will be an e-newsletter that will be sent to stakeholders monthly. The e-news will help spread the stories and prompt others to share the articles within their networks.

Asked how success of the news program will be gauged, Werner-Arcé says the organization would like to see increased traffic on the website and more referrals to agencies as a result of people visiting the site and taking action.

“People will see the stories and want more information,” she says.

Since the news site’s launch, people connected to the epilepsy community have communicated their input, including the mother of a woman with a seizure disorder whose story will be shared in an upcoming article.

This is the type of response Werner-Arcé says she’s hoping to see gain momentum on the site.

“We’re really excited about (the news program) and we’re looking forward to story ideas and comments, and that kind of feedback will help strengthen our stories and the direction of the news,” she says.

The Epilepsy Ontario news program is provided by Axiom News.

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Video to train police on seizure disorders

March 29, 2012

Police officer with epilepsy helping create video to ensure unfortunate incident never happens again
Deron Hamel

Ottawa Police Service (OPS) officer Marcel Allen and the OPS Professional Development Centre are developing a training video about seizure disorders to educate law enforcement officials to help ensure an incident that happened to Allen a year and a half ago never happens to anyone else.

Once the OPS Professional Development Centre has completed the video, it will be considered for the Canadian Police Knowledge Network, a website providing training resources for Canadian police.

On Aug. 8, 2010, Allen, who has epilepsy, was off duty and driving his children to their home in Pembroke, Ont. While sitting in traffic in front of Parliament Hill he went into seizure. As Allen was coming out of seizure, a nearby RCMP officer responded, followed by Allen’s OPS colleagues.

While in what Allen describes as a “fight or flight” postictal state he struggled with officers, resulting in him being Tasered by an OPS colleague.

“Their reaction in trying to help me was probably the worst reaction that they could have had,” says Allen. “When I realized that, I thought, OK, something has to be done.”

And what had to be done, Allen says, was channel the frustration he had from this incident into something positive, and the best way to accomplish this was by educating law enforcement about seizure disorders.

The video Allen and the OPS Professional Development Centre are working on will educate law enforcement officials about what to do and what not to do to assist a person who is having a seizure.

Included in the video will be education on how police addressing individuals with a seizure disorders need to be cognizant of keeping their distance, the tone they take when speaking, and understand that a person in a postictal state cannot comprehend verbal direction.

The video will also address the fact that a person with postictal behaviours, to the untrained eye, may appear to be under the influence of controlled substances or have a mental illness.

This misunderstanding has resulted in police taking people with seizure disorders to mental-health facilities, notes Allen.

“An officer has to understand and realize this,” says Allen. “If a person is having a tonic-clonic seizure, if the person is convulsing in any way . . . they need medical attention.”

Allen has received a lot of support and encouragement from his colleagues, including the officer who Tasered him that day. The officer in the incident has even offered to appear in the video to explain his reaction.

“He called me . . . and said ‘yeah, I have no problem being a part of that video,’ ” Allen explains.

Aside from providing police training, Allen says he has another important reason for making the video.

“I want to leave a legacy for my children,” he says. “Hopefully, this is something they’ll look back on that their father did.”

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Ottawa police honouring Purple Day for first time

March 21, 2012

Incident involving an officer with epilepsy was the catalyst for raising awareness within police force
Deron Hamel

On Aug. 8, 2010, Marcel Allen, an off-duty officer with the Ottawa Police Service (OPS), was driving his children to their home in Pembroke, Ont. when he had an epileptic seizure in front of Parliament Hill. He characterizes the events that would unfold as a “turning point” in his life, one that would inspire him to raise awareness of seizure disorders within the OPS.

Shortly after Allen’s seizure ended that day, a nearby RCMP officer responded, followed by OPS officers. The RCMP officer grabbed Allen’s arm at one point. Allen, now in a “fight or flight” postictal state, began to struggle, prompting an OPS officer, a colleague of his, to Taser him.

While the incident garnered some negative media coverage, Allen underscores he has never had resentment towards his colleague for using the Taser; what he wanted to see is change in how police address situations involving people who’ve had seizures.

“Their reaction in trying to help me was probably the worst reaction that they could have had,” says Allen. “When I realized that, I thought, OK, something has to be done.”

What Allen is doing is embarking on a journey to educate police about seizure disorders and how to effectively cope with situations involving people who have had seizures.

Encouraging the OPS to mark Purple Day, an international event aimed at raising epilepsy awareness, is a major step in this process.

On March 26, the OPS will, for the first time, acknowledge Purple Day. Allen has played a large part in the OPS’s decision to honour the day through his work advocating on behalf of himself and others affected by seizure disorders.

To acknowledge the day, the OPS will be making an announcement throughout the organization to ask people to wear purple and to explain that police training is being planned so officers have more information when addressing people who have had a seizure.

The information being sent throughout the OPS will also explain what epilepsy is and how one in 100 people have the neurological disorder.

By acknowledging Purple Day, Allen says he hopes people within the OPS will take time to better understand epilepsy and seizures.

“I think it will be the beginning of acknowledging that seizure disorders are probably a little bit more (common) . . . than we believe,” says Allen.

Keep reading the Epilepsy Ontario website to learn about a video Marcel Allen is working on to help train police to effectively work in situations involving people who’ve had seizures.

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Epilepsy community moves provincial strategy a step forward

March 13, 2012

Epilepsy Action Day successfully creates buy-in from MPPs
Deron Hamel

Melanie Jeffrey says the recent Epilepsy Action Day held at Queen’s Park proved to be a valuable step forward in creating a provincial epilepsy strategy.

Jeffrey, a member of the epilepsy community and outspoken advocate for epilepsy awareness, says the best thing that could come from Epilepsy Action Day would be heightened awareness of the need for better access to medication for seizure prevention and disability and employment supports for people affected by the chronic neurological condition.

Jeffrey and the other 40 people from Ontario’s epilepsy community, along with representatives from Epilepsy Ontario, met with MPPs and policy advisers during the event. She’s commending the politicians for understanding the key challenges and committing to tackle the issues.

The MPPs understand that “it’s more cost-effective to provide quality care than it is to provide substandard care — we know that for every disorder,” Jeffrey said during the press conference that followed the March 6 event.

Epilepsy Action Day comes on the heels of a recent announcement from Economic Development and Innovation Minister Brad Duguid and the Ontario Brain Institute that support for the Epilepsy Discovery Project is being granted.

The project, which is bringing together researchers, clinicians, not-for-profit epilepsy organizations and the private sector, will examine the effectiveness of pharmacological and gene-treatment therapies, while considering potential benefits of surgery, medical diets and deep-brain stimulation.

The epilepsy community and Epilepsy Ontario took time during the event to applaud the province for this support, as well as to commend MPPs for taking time to listen to the community’s concerns and their interest in learning more about epilepsy.

“Everyone has found the meetings to be very positive and encouraging,” says Epilepsy Ontario executive director Rozalyn Werner-Arcé.

“It has been a great opportunity for those who haven’t known much about epilepsy — people are really engaged and want to know more.

“For those who are familiar with the epilepsy strategy, they’re very excited about it, see the possibilities, and I believe they’ll do what they can to help support it and move it forward.”

While Jeffrey says she’s satisfied with the outcome of Epilepsy Awareness Day, she adds there’s still work to be done and that she will not stop until the epilepsy community’s goals are achieved.

“This is the third year I’ve been here at Queen’s Park for Epilepsy Action Day, (and) I’ll be back every year until we get somewhere with this. It’s desperately needed,” she says.

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.