Author Archives: DHamel

New case manager is connecting people with the epilepsy services they need

June 25, 2024

By Deron Hamel

Josh Gieg says the most exciting part of his new position as Epilepsy Ontario’s case manager is connecting people living in under-served areas of Ontario with epilepsy services.

Josh Gieg, pictured above, is Epilepsy Ontario’s new case manager.

Josh, who stepped into his role May 29, also says he enjoys promoting collaboration and diversity within the epilepsy community.

But helping people with epilepsy and their families who are living in remote regions of the province connect with the services they need is what feels most rewarding, he says.

“I’m really excited to be in a position to connect with those folks who may not have access to those same services that others do in other regions of the province,” Josh tells Voices of Epilepsy.

As case manager, Josh also provides individual counselling and group support to people accessing Epilepsy Ontario’s services.

When people recently diagnosed with a seizure disorder need help navigating the system, Josh is there to offer education, advocacy and support catered to their individual needs.

Josh says he’s also looking forward to providing the HOBSCOTCH (Home-based Self-management and Cognitive Training) and UPLIFT (Using Practice and Learning to Increase Favourable Thoughts) programs, which have been specifically designed for individuals impacted by epilepsy.

Josh received an honours degree in psychology from the University of Guelph in 2021. After completing his education, Josh took a job as case manager at Epilepsy South Central Ontario (ESCO) overseeing the agency’s adult and family services, a position he continues to hold on a part-time basis.

Looking ahead, Josh says there are many opportunities for him to make a difference in people’s lives by advocating for them, creating a sense of belonging, raising awareness and reducing epilepsy’s stigma.

“I have been a part of this epilepsy community for close to three years now, and in this new role I am just so excited to carry forward with that work while also being able to serve people in areas that may not have had these services prior,” he says.

“I’m just really looking forward to making that difference.”

Experiences with epilepsy inspire student to educate teachers about the condition

May 3, 2024

By Deron Hamel

Matthew Farrish says he hopes to one day help students and their teachers better understand epilepsy and the challenges children living with seizure disorders face at school.

Matthew Farrish, pictured above, was one of six students to receive an Epilepsy Ontario scholarship in 2023.

Having lived with epilepsy since age 2, Matthew, who grew up in Thunder Bay, knows first-hand about this.

“While attending school in northern Ontario, I noticed that some teachers don’t always understand how having epilepsy can really challenge students,” he says.

“It’s often an invisible disability, and it’s been hard for me to advocate for my needs when some people don’t really consider the difference between equity and equality.”

By the time he reached high school, Matthew says he realized epilepsy “impacts all aspects of your life,” especially a person’s ability to learn, concentrate and remember.

Matthew says concentrating on his schoolwork, volunteering and making music has helped him through the challenges epilepsy presents.

But, he adds, he has always seen a need for greater individualized support from schools to help students living with epilepsy.

“Students with epilepsy need extra supports, specific to them, to maximize their learning,” he says.

“After explaining my difficulties to my teachers, they were often surprised. For this reason, I would like to help children and teachers learn more about epilepsy.”

Matthew is taking the first steps towards this goal. He is in his first year at Lakehead University, studying education and sociology.

He says his challenges with epilepsy, his understanding of the need for better epilepsy education in schools and the enjoyment he garnered as a volunteer hockey coach have inspired him to pursue a teaching career.

“I feel like (epilepsy) is a misunderstood disorder, even though it’s experienced by many people,” he says.

“Because I’ll be studying to be a teacher, I’m hoping to make changes within the education system to support students with epilepsy.”

Matthew is one of six recipients of Epilepsy Ontario’s 2023 annual scholarship. For more than 15 years, Epilepsy Ontario has been providing scholarships to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.

Renowned crime author inspires student with epilepsy to focus on her dreams

April 8, 2024

By Deron Hamel

 

Lyndsey Canini, pictured above, is one of six recipients of Epilepsy Ontario’s 2023 annual scholarship.

While recovering from a tonic-clonic seizure, Lyndsey Canini says she found inspiration and motivation to continue pursuing her studies in creative writing and criminology after learning about the life of one of the world’s most celebrated authors.

 

At the time, the University of Ottawa student says she had been released from hospital and was worried about how epilepsy might impact her future when she learned that one of her favourite authors, Agatha Christie, also lived with a seizure disorder.

Lyndsey says she has always dreamed of becoming an author, but after experiencing her first tonic-clonic seizure, she was concerned that would not be possible.

But researching the life of the author often called “the Queen of Crime” changed everything, Lyndsey says.

“(I was) previously stunned by her mastery of suspense novels, my favourite genre, (but) my connection to her deepened upon discovering we had a unique paralleled experience,” Lyndsey says.

“Suddenly, my dreams felt more closely tethered to reality.”

Although Lyndsey has had seizures and more hospital visits since experiencing what she calls her “pivotal moment” of learning about the similarities she shares with the famous crime writer, she says her dreams “have never been more firmly planted.”

Lyndsey was able to complete last year’s studies with straight A’s and returned to the University of Ottawa in the fall to continue her education.

“Epileptic contemporaries, such as my role model and writing inspiration, Agatha Christie, have taught me that you cannot succumb to your disability,” Lyndsey says.

“The only one with a hand in your future is you, and I am ready to hold on tight and see where my words can carry me.”

Asked what impact she hopes to have on others living with epilepsy, Lindsey says she would like to help make epilepsy education more prevalent in schools.

“Seizures and epilepsy were never something that came up in my educational career, and since no one around me dealt with seizures, I knew virtually nothing about epilepsy until I was diagnosed,” she says.

“I’d propose a form of epilepsy education to be implemented into health classes for kids of all grades, following various formats to best adhere to the comprehensive ability of the age group. Be it through picture books, short stories, infographics, or research projects, I would like to help develop a curriculum that integrates this knowledge into our Ontario school systems.”

Lyndsey is one of six recipients of Epilepsy Ontario’s 2023 annual scholarship. For more than 15 years, Epilepsy Ontario has been providing scholarships to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.

How a positive attitude helped student overcome epilepsy challenges

March 4, 2024

By Deron Hamel

Amber Demers recalls the first time she experienced a seizure – it was in 2007, the day before classes began when she was a first-year university student.

Amber Demers holds the cheque she received after being awarded an Epilepsy Ontario Scholarship.

Shortly after, she was diagnosed with epilepsy. Simultaneously, Amber found herself facing two new challenges: living with a seizure disorder and dealing with a full-time university class schedule.

“Not only was I terrified of my next adventure of navigating the world of post-secondary education, I was now facing this new adventure with an epilepsy diagnosis filled with fear and uncertainty,” she says.

At the time, Amber says her neurologist and family doctor could not understand what was causing her seizures. What Amber describes as her “seizure-control journey” started with her testing new medications and her doctors trying to understand what was triggering her seizures.

“This was all done while maintaining a full-time course load in university, attending all my classes and completing all of my assignments,” Amber says.

“This was not an easy task – especially while trying to understand my triggers.”

At this point, Amber says she needed to put supports in place to help her get through university while maintaining a low stress level, despite repeated seizures.

She began working to understand her epilepsy so she could continue living a successful life while limiting epilepsy’s impact.

“This led me to the development of a positive attitude,” Amber says. “There was no way I could handle all of these obstacles without this. I focused on the positives in my life and positive steps to continuously move forward.”

Amber has also found that involving herself in the epilepsy community has helped her cope with her condition.

Since 2012 she has been involved with Epilepsy Niagara in various capacities including serving as a board member, volunteering and being on the events committee. Most recently, she became president of the agency’s board of directors.

“As the board president, my goal has been community outreach and determining how the agency can provide support services to those living in Niagara,” she says.

“Events are crucial to Epilepsy Niagara, as (they) assist with providing awareness about epilepsy, informing members of the community and allowing for fundraising efforts to increase the amount of support that Epilepsy Niagara can provide.”

Amber is one of six recipients of Epilepsy Ontario’s 2023 annual scholarship. For more than 15 years, Epilepsy Ontario has been providing scholarships to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.