Luke Quinlivan & Riley Elson - Epilepsy Australia

Seeking to raise the
profile of epilepsy in the
ACT, Peter Jean, from
the Canberra Times,
met with Epilepsy ACT
executive director
Jacinta Cummins,
to find out more about
epilepsy and Epilepsy
ACT.
Formed in 1982,
Epilepsy ACT provides
services for the 5000
Canberrans living with
epilepsy, their families
and the community
in the ACT and
surrounding areas.
Services offered
include counselling and
support, community
education, advocacy,
and training in the
management of
epilepsy.
For more information
about Epilepsy ACT go to
www.epilepsyact.org.au
or call 02 6287 4555
Raising the profile of
epilepsy in the ACT
It wasn’t really an orthodox
use of work time, but
Jacinta Cummins was
planning to sneak out of her
office for an hour or so last
week to help an Epilepsy
ACT member finish off a
mammoth houseclean.
Some of my things aren’t
quite ‘normal stuff’ but I
think they’re needed for
people they just give them
that kickstart,” the Epilepsy
ACT executive director
explains.
The man Jacinta was going
to help had been unwell for
decades before medication
changes led to a dramatic
reduction in his epileptic
seizures and an end to a
prescription drug-induced
fogginess.
“Until 17 months ago he
had been living in a foggy
world and he finally found a
neurologist who’d listen to
him.
“The neurologist took him
off a lot of meds and it’s
amazing, this last 17 months
he’s started becoming his
own person.
“He’s never been able to
work, he’s never been able to
drive because of his seizures.
He even found it difficult to
walk his kids to school.”
The man may soon be able
to apply for a driver’s licence
and look for a part-time job.
He has taken advantage of
his new energy by throwing
himself into housecleaning,
cooking and completing
parenting courses.
“He’s really, really trying
to come back into the
community again,” Jaincta
says.
Jacinta’s office is a former
science laboratory on the first
floor of the old school now
called the Grant Cameron
Community Centre in Holder.
She is joined every day by
volunteer Elizabeth O’Brien
who has dedicated herself to
Epilepsy ACT after retiring
from a career in special
education and also works
with a core group of about 30
other volunteers.
From a desk by the window
Jacinta offers information and
advice to anybody who has
been told by their doctor that
they have joined about 5000
Canberrans with one of the
neurological conditions in the
epilepsy “family”.
Calm and well-spoken, she
has no desire to be recognised
publicly for her work and
suggests O’Brien or Epilepsy
ACT chairman Richard
Eccles might be better
subjects for a newspaper
profile.
But she agreed to be
interviewed to help raise
the profile of epilepsy,
a condition she believes
receives little public or
Photo: Gary Schafer
government attention despite
the fact it affects 230,000
Australians and caused the
deaths of 143 children over a
10-year period.
Married with two adult
sons, Jacinta has spent most
of her adult life working in
the community
sector and in
libraries.
She moved to
Canberra from
Victoria 27
years ago and
was undertaking
community
work with senior
citizens until
being offered the
position as Epilepsy ACT’s
only paid staff member 12
years ago.
She is a past chair
of the Joint Epilepsy
Council of Australia, was
pivotal in establishing the
Parliamentary Friends of
Epilepsy, and wrote a national
report on epilepsy and a
guide for workers and their
employers on the condition.
Jacinta says it can be
frightening for people to
discover they have epilepsy
and many newly diagnosed
sufferers are children and
adolescents.
“It’s random and some of
them will grow out of it. But
then there’s higher incidence
as you get to the older age
group because of strokes and
their impact on the brain,”
she says.
“A lot of kids seem to
develop it when they’re
starting school or uni. It’s not
a lifelong
illness and
sometimes
the sooner
you can get
people on
medication,
the sooner
they’ll come
off it.”
Jacinta
says the
onset of epileptic seizures can
be devastating for a man who
is the only breadwinner for a
young family.
“If he’s a tradesman, then
his job’s gone, then the
family’s gone, the house is
gone. Nothing left,” she says.
“You’ve got to get in
straight away, you’ve got
to put in the supports. You
need to be there to help and
support him and then get him
back into the workforce.”
Jacinta says a social stigma
about epilepsy can place
people’s jobs at risk, even
if their symptoms do not
prevent them from safely
working.
You’ve got to get in
straight away, you’ve
got to put in the
supports. You need to
be there to help and
support him and then
get him back into the
workforce.
You have people who
don’t disclose that they have
epilepsy and then when they
do people panic and then say,
We don’t want someone with
epilepsy here.’
“ And then you get the
person who’s been in the job
for years and years and has
been through about six bosses
and the seventh boss comes
along and says ‘Oh, epilepsy
desk duty, no work for you.’
They don’t take the time to
find out and they’ve got no
idea.”
Jacinta says Epilepsy
ACT will offer to meet with
employers or refer people
to lawyers. People often
require advice on dealing
with Centrelink or with ACT
Housing. You’ve got to get
in straight away, you’ve got
to put in the supports. You
need to be there to help and
support him and then get him
back into the workforce.
She tells the story of a man
with epilepsy who managed
to bring the condition under
control, stop suffering from
seizures and hold down a job.
He was living in a onebedroom
flat with his
partner when the partner fell
pregnant.
The man had been prone
to seizures when overtired
and Jacinta warned him
that he would need to move
into a bigger property when
the baby was born. But a
shortage of properties meant
public housing authorities
were unable to help.
When the baby was born he
didn’t get enough sleep and
he started back with seizures.
“So we took it all the way
up through Housing and got
to the last point and then
they gave them a house that
afternoon.
They got him into the house
and now because everything’s
in order, and he gets enough
sleep, he’s buying his own
house, holding down a job.
“Sometimes simple
interventions can stop bad
things from happening.”
Jacinta clearly loves her
job.
“I think you get addicted to
community work,” she says.
As long I think I’m doing
something right (which I
think I am) and as long as
there’s a new challenge in
front that I think I can meet,
then I’ll keep on going.”
Reprinted with permission
Canberra Times.
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Remembering Adam
The Adam Fry
Memorial football
match, auspiced by
Tuggeranong United
Football Club, took
place again this year
in March. Launching
the new football
season, the day raised
awareness of epilepsy
and funds for Epilepsy
ACT. Congratulations
to State League
Division 10 for taking
out the Adam Fry
Memorial Shield for
2012.
10 THE EPILEPSY REPORT JUNE 2012 THE EPILEPSY REPORT JUNE 2012 11