Author Archives: DHamel

Epilepsy diagnosis helps student understand her condition and pursue her dreams

July 2, 2015

By Deron Hamel

Before being diagnosed with epilepsy, Amanda Cook says she felt “trapped” by her seizure disorder. But since her diagnosis, Amanda says her confidence has soared, and she’s now getting ready to take the first steps toward a career in interior design.

OBCL scholarship recipient Amanda Cook is seen here with OBCL president Lawton Osler during the presentation of her award.

Amanda has been accepted into the interior design technology program at George Brown College for the upcoming academic year. The first time she applied for a spot in the program she declined the offer because she believed her condition would be an obstacle to her success.

“I saw my epilepsy as a barrier and declined myself the opportunity to pursue my education because of it,” she says.

Amanda experiences simple partial seizures and complex partial seizures. When a person is having a partial seizure, others may not be aware of what is happening.

Amanda notes that most people associate epilepsy with tonic-clonic seizures and many people know what to do when someone is having one. Tonic-clonic seizures are seizures that cause a person to lose consciousness, fall to the ground and have convulsions.

People experiencing partial seizures, however, are alert and able to interact. But after the seizure the person will usually have a memory lapse.

Before her diagnosis, Amanda says her teachers, friends and family members didn’t understand what she was going through. Even she didn’t fully understand it, she says. Having a formal diagnosis encouraged Amanda to learn more about her condition and seek support to help her live with her seizures.

With the help of support groups, friends, family and school counsellors, Amanda says her confidence has dramatically increased. This change has come at a crucial time, as she is beginning to chart the course of her future.

“Before I was diagnosed with epilepsy, my hope for my future was bleak; I always thought I would either be in an accident while I was unaware of my surroundings, or would never do well enough in school to be accepted into or graduate from any college,” Amanda says.

“Now that I have been diagnosed with epilepsy, I know that even though I may struggle with medical, academic and personal issues throughout my college life and onwards.

“I will always be able to find a way to move forward.”

Amanda is one of four students to receive an OBCL Epilepsy Scholarship Award this year. The scholarships were presented to recipients June 17 during Epilepsy Ontario’s Summerfest: Sail Away cruise in Toronto.

As she moves ahead with her academic and career plans, Amanda says she will raise epilepsy awareness and encourage others living with the condition to not let their seizure disorder interfere with their ambitions and goals.

OBCL has been supporting students with epilepsy through the scholarship awards since 2006. Every year, up to 10 Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

CBD offers hope to people with seizure disorders, but more information, support, needed: Carol Clarke

June 25, 2015

By Deron Hamel

The mother of a St. Thomas, Ont. woman with complex-partial seizures is hoping the availability of cannabidiol (CBD), an extract of the cannabis plant, will enhance her daughter’s quality of life. However, Carol Clarke says there needs to be more information available about proper CBD dosages as well as support for people receiving this treatment.

Carol’s daughter, 28-year-old Brooke Clarke, has had a seizure disorder since adolescence. She has tried numerous surgical and pharmaceutical treatments with limited results. After consulting several doctors, Brooke and Carol finally found a physician who would write a prescription for medicinal marijuana in hopes that the high CBD content would reduce Brooke’s seizures.

Unlike THC, the most abundant chemical compound in cannabis, CBD will not get people “high.” CBD is the most abundant, non-psychoactive chemical compound in cannabis, and initial clinical trial results are very promising, at least for particular epilepsy syndromes and certain seizure types.

Brooke, who has asthma, cannot smoke the plant. Until recently, smoking or vaporizing dry-leaf cannabis were the only ways to legally ingest it. But in a landmark decision June 11, the Supreme Court of Canada made it legal to ingest the plant in any form when medically prescribed.

Still, Carol hasn’t taken the next step to obtain medical marijuana from a licensed producer. She needs to have it converted to an oil, and her doctor suggested the cannabis-enriched oil be made into cookies or some other edible form. Carol’s concern is that she does not know the proper dosage.

“How do I know how much to put into a cookie? How many cookies should she eat? How often?” Carol says. “I (am) really skeptical about going that route. Between trying to figure out the dosage and the expensive cost of it, we have done nothing at this point.”

Adding to the lack of information available about dosing CBD is the cost of buying medicinal marijuana, Carol says. Brooke’s treatment would cost $500 per month.

“I’m a single mother and we can’t afford $500 per month; we can’t live in poverty so that she has no seizures,” Carol says.

“The other hurdle is that if she were to go that route, then who is going to help us to ensure that she’s doing OK? If it does work, then we want them off all of the other (medications) that they’re already on, so somebody needs to help us wade through that.”

As the benefits of CBD become more public, Carol says she hopes to see the treatment covered by OHIP’s medication plan, a move that would alleviate the financial burden for people with seizure disorders and their families.

“Especially if it works as well as we’re seeing,” she says. “My daughter has no quality of life, so if (CBD) is going to give her that quality of life, then for sure, they should be covering the costs, especially when nothing else works.”

Supreme Court’s medicinal marijuana ruling a relief for family of child with Dravet syndrome

June 18, 2015

By Deron Hamel

The Supreme Court of Canada’s landmark decision to legalize all forms of consumption of medicinal marijuana means Mandy McKnight no longer has to break the law in order to stop her young son’s seizures.

Mandy’s seven-year-old son, Liam, has Dravet syndrome, a severe form of epilepsy with frequent, prolonged, drug-resistant seizures. He has had a licence to use medical marijuana to treat his epilepsy since he was five. Liam had been having nearly 70 seizures per day.

Since Liam began the treatment, his seizures have been reduced by 90 per cent, and his quality of life has been greatly improved, Mandy says. Today, the only medical treatment he receives is coconut oil enriched with cannabidiol (CBD), a substance derived from the marijuana plant. CBD is the most abundant, non-psychoactive chemical compound in cannabis.

Aside from experiencing significantly fewer seizures, Liam is also sleeping better and has no behavioural issues. He has been gradually weaned off his other anti-seizure drugs and is no longer dealing with the side effects of those medications.

However, until now, the only legal way to ingest medicinal marijuana was through smoking or vaporizing the plant it in its dry-leaf form – which is not a process that’s palatable for a young child.

The McKnight family receives Liam’s prescription of dry marijuana which Mandy mixes with coconut oil in a crockpot. A sample of the cannabis-enriched oil is then sent to a laboratory in British Columbia where it is analyzed to determine the CBD and THC content.

Based on the results, the McKnights determine the correct dosage which they then administer to Liam in a solid form which he eats with his meals.

This process was technically illegal, so the Supreme Court’s unanimous June 11 ruling comes as a huge relief to Mandy and her family.

“The fact that we have not got that hanging over our heads right now is just incredible – it feels like a huge weight has been lifted off of us,” Mandy tells Voices of Epilepsy.

In its ruling, the Supreme Court said that prohibiting “non-dried forms of medical marijuana limits liberty and security of the person in a manner that is arbitrary and hence is not in accord with the principles of fundamental justice.”

While the McKnights are relieved with the Supreme Court’s ruling, there are still grey areas of the law that need to be clarified, Mandy says.

For instance, under the court’s decision it’s legal for people with prescriptions to consume medicinal marijuana in all forms, but the law is not clear on who can produce and distribute it.

Mandy also underscores the importance of patients who use medicinal marijuana to have direction from their doctor.

“I think it’s important to have medical guidance – you really are on your own when it comes to this treatment,” she says. “It’s a broad range of what’s available in terms of strains (of medicinal marijuana) and terms of dosing the cannabis and the interactions with other medications. It’s really important to have that medical knowledge and the guidance of a doctor.”

Annual walk an opportunity for Epilepsy Durham Region to build stronger community ties

June 12, 2015

By Deron Hamel

Epilepsy Durham Region executive director Dianne McKenzie says an upcoming fundraising walk will be an opportunity for the agency to build stronger community ties as well as raise funds and awareness of epilepsy.

Arnold Clarke, pictured above, has raised $2,700 since he began his 300-kilometre Walk of Courage on May 31.

Epilepsy Durham Region is one of eight grassroots organizations in Durham Region participating in this year’s annual Walk for Your Charity in Oshawa on Sunday (June 14). The event helps participants raise money and awareness of the organizations they represent.

The event, hosted by the Durham Community Foundation, is being held at Oshawa’s Lakeview Park. The main part of the event will see participating teams circle a 1.5-kilometre loop in the park.

Epilepsy Durham Region is calling its participation in the event the Walk of Courage.

McKenzie says an exciting aspect of this event is the fact that so many not-for-profit organizations are collaborating.

“Walking together, there will be a real sense of community and unity,” she tells Voices of Epilepsy. “This is really an opportunity for us to mesh with other agencies. So our voices are stronger.”

Another exciting part of the event will be an appearance from Arnold Clarke. Clarke, who is living with epilepsy and who has been involved with Epilepsy Durham Region for more than 10 years, will be completing the final leg of a 300-kilometre fundraising walk he began on May 31.

To date, he has raised about $2,700 for Epilepsy Durham Region.

McKenzie says Clark has been a dedicated volunteer to Epilepsy Durham Region, adding he received the Queen’s Jubilee award in 2013.

“Along with raising funds and awareness through his Walk of Courage, Arnold also steps up with many other volunteering initiatives, including making monthly trips to businesses throughout Durham Region, collecting donations from coin boxes, and lending his time to local churches and Sunday schools,” she says.

McKenzie says Epilepsy Durham Region is hoping to raise $3,000 at the event, but she adds that raising awareness of epilepsy is equally important.

More than 300,000 Canadians and more than 50 million people worldwide are diagnosed with epilepsy in their lifetime.

“With the sheer number of people living with epilepsy, and the impact this disease has on an individual and their families, our goal is to ensure that local community support is available to address the catastrophic effects of this (condition),” McKenzie says. “Participation and donations for (the walk) will help this organization ensure that local support is available.”

Registration for the event has closed, however, people can still come down to cheer on participants. Click here for more information.