By Callum Ludwig
For Seville resident Jay Beckerleg, a medical condition has made it difficult to live their life to its full potential.
Jay has been diagnosed with Psychogenic Non-Epileptic Seizures (PNES) but was recently awarded a grant from Hireup, Australia’s largest NDIS-registered disability support worker platform. The Hireup Impact Grants program is designed to fund activities not covered by an NDIS plan.
Jay said PNES is not very well known, and the fact that a mental health condition can cause a physical health condition is something people are still trying to wrap their heads around.
“It is hard for social stigma, the idea that mental health and trauma can result in a physical issue. It’s something that controls my life in the sense that it controls my friendships, it controls who I see hang out with and when I can hang out people,” he said.
“It controls parts of me and my independence when it comes to driving, leaving my house unattended, and if I do leave unattended I am at a major risk of having a seizure out in public and what that means for me and my safety.”
The Epilepsy Foundation states that PNES resemble, mimic or can appear outwardly like epileptic seizures, but their cause is psychological. PNES in most cases come from a psychological conflict or accompany an underlying psychiatric disorder and has no known organic or physical cause.
Jay said he was pretty surprised and shocked to hear they were receiving the grant.
“I was definitely not expecting it, and I’ve just gone through the process of ‘Okay, this is actually happening,” he said.
“I’ve been thinking about the possibilities that can come to me from this opportunity, and how much it’s going to truly change my life and change my access into reaching out back into my community and my friendship circles and connecting with my family again.”
Jay’s dad Kevin applied for the grant on behalf of Jay, requesting an assistance dog trained to do deep pressure therapy and alert someone if Jay has seizures.
Jay said he is looking forward to new goals such as possibly moving out and being able to go on public transport without as much worry.
“Having this is massive, my whole life has been a struggle for the last couple of years and to know this will no longer control my life is a massive relief,” he said.
“Making things like this available to people who are a part of the disabled community means creating opportunities, giving them a better quality of life, creating social and community connections. It’s life-changing, and something there should be more access to.”
A person with PNES will not respond to treatment with antiseizure medication, there are no proven medications to treat it. Antiseizure drugs that cause psychiatric symptoms can sometimes worsen PNES.
Hireup Co-CEO Laura O’Reilly said they are thrilled to be providing funding to two community-
focused projects and seven individuals.
“This is the inaugural Hireup Impact Grants program and it is our hope that there will be more to come from Hireup in this space because we need grants like this to supplement the NDIS,” she said.
“We hope that the Hireup Impact Grants program helps the successful recipients access and connect more meaningfully in their communities and improve their wellbeing so they can enjoy many special moments in their lives.”
The funding ranged from $1,200 to $15,000 and all activities fall outside of the NDIS funding criteria.
