Epilepsy advocates say pandemic impacting support services
TIMMINS -- The raising of a purple flag at Timmins city hall Monday invokes more than the need to raise awareness for epilepsy, it also honours the challenges people impacted by the disorder have been facing during the COVID-19 pandemic.
That's according to the Seizure & Brain Injury Centre's executive director, AnneMarie Sorsa, who said one of the main struggles has been accessing in-person supports.
"Definitely some of the treatments have been delayed, in northern clients need to travel to the Toronto and southern Ontario areas to see the specialists," Sorsa said.
"However, they have been able to access the services they need through virtual supports."
Tough to get treatment
For Kristy Leveille Mills, the pandemic made it "hell" to get treatment for her 13-year-old son Skyler, who had his first known seizure in March, just before the first lockdown.
Skyler was then diagnosed with epilepsy through a video call with a neurologist, which was confirmed that with a diagnostic test months later.
Leveille Mills said while it is meant to be convenient, virtual healthcare is a tedious way to manage a new health problem.
"It's frustrating because I can only contact the neurologist through email and sometimes don't get a response for days," Leveille Mills wrote to CTV.
"The care is there, but it's ... not at the same level it would be if we weren't in a pandemic."
'At least it's something'
This garners sympathy from Jessica Palubiskie, who has battled her epilepsy for decades.
While she has been able to manage her version of the disorder — working down from several seizures per week to a few per month — Palubiskie feels the current crisis can be triggering for people suffering from the condition.
"It does get lonely and stress is one of the most popular triggers and being by yourself (doesn't) help," Palubiskie said.
As well, she said COVID-19 is especially dangerous for her and others with epilepsy, with health experts saying any illness or infection could trigger seizures in some epileptics.
And while this crisis is also causing group support sessions and personal meetings with health workers to be infrequent, Palubiskie said it's crucial to take advantage of the virtual supports available during this trying time.
"Reach out and get the help that you need," she said. "If it can't be face-to-face, even if it's FaceTime, it's not the same, but at least it's something."
'We all make do'
Palubiskie is a former board member of the Seizure & Brain Injury Centre, holds fundraisers for the organization and volunteers at epilepsy groups in Timmins and Sudbury.
She said the support she's received at the centre is top-notch and that the pandemic hasn't changed that.
"The help they provide is amazing, they do everything to help the families and the people that have epilepsy," Palubiskie said.
For Leveille Mills, she's disappointed by the delays in getting support for Skyler but that she doesn't blame the providers, saying she understands that resources are tight these days.
Leveille Mills said that while her family hopes more can be done, they will have to "just put up with it and make do."
Educating about epilepsy
Communities around the country are lighting up landmarks purple for the month — leading up to "Purple Day" on March 26, when communities hold events in honour of epilepsy awareness.
It's also a time to educate people about the disorder — which, despite all the progress on that front, Palubiskie said she is surprised to encounter people who still have outdated notions about the condition.
"I have my seizures and I've had them in public — I've seen several people have seizures in public ... people want to move them right away and you kind of have to tell them, no you can't," Palubiskie said.
Among the top myths, she hopes people unlearn the notions of putting spoons or other objects into an epileptic's mouth or having the person try to swallow his or her tongue.
The most current proper first-aid procedure when dealing with someone who has epilepsy can be found here.
"If more people know what to do, then you (won't) have to worry about things like that," Palubiskie said.