Sharing the vision epilepsy: life’s turning point Gavin Dimitri

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THE EPILEPSY REPORT OCTOBER 2008

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                          THE EPILEPSY REPORT OCTOBER 2008

O

ur eldest son Matthew was 

diagnosed with epilepsy when he 

was 21. There had been no indicators 

of the condition until he was about 18 

when he started experiencing some 

turns. These became more frequent. The 

diagnosis was a great shock to him and 

to us. He had always been a very healthy 

and active person and he played sport at a 

high level. At that time he was a student 

at the Australian National University 

and was living in a shared house with 

friends. He had worked in England for a 

year after leaving school and was a very 

independent person.

 Naturally as a young man in his 20’s 

he struggled with the diagnosis, the 

stigma of it and the impact on his life 

– he was no longer bullet proof and in 

complete control of his life.  He hated 

going to doctors. Although he did not 

talk about it with us I know at times 

he was afraid. Very few of his friends 

knew the full story. He eventually had to 

change his part-time work as a painter’s 

assistant as he could no longer be up on 

scaffolding. Fortunately for him his boss 

was very supportive and allowed him 

to do a lot of the ‘cutting- in’ work from 

the floor.  Many people with epilepsy 

can have a less positive experience in the 

workplace.

  As parents we tackled this situation 

in the same way as we had tackled our 

daughter’s asthma – she was diagnosed 

at age 3. We gained as much information 

as we could. We helped Matt find a 

specialist he felt comfortable with, we 

joined the ACT Epilepsy Association, 

and we encouraged him to learn as much 

as he could about epilepsy so he could 

manage it. Our daughter perhaps had 

an advantage as she had grown up with 

her condition, she knew the triggers and 

risks and had learned to manage it over 

many years. 

However, with the epilepsy diagnosis, 

fear entered our lives as well – we were 

afraid that he might have a seizure and 

injure himself, afraid that people would 

not know how to help him, or worst of 

all we thought, afraid he could have an 

accident while driving.

Matt finished his degree in Actuarial 

studies and at age 23 moved to Sydney 

after accepting a job in a large firm. 

He didn’t inform them initially about 

his epilepsy but gradually over time he 

talked about it more openly and again 

he was very fortunate that they were 

supportive. He was highly regarded by 

them and he travelled overseas for work 

on a couple of occasions. He was being 

treated by a specialist in Sydney who 

did not feel medication would be helpful 

in reducing his type of seizures. He 

managed the seizures by monitoring his 

lifestyle – sleep, stress, alcohol intake 

etc and he did modify his lifestyle quite 

a bit. However he was working long 

hours, and at times his job was very 

stressful. As he lived interstate we don’t 

know whether the seizures became more 

frequent – he didn’t tell us.

A few weeks after he turned 26, Matt 

died suddenly and unexpectedly in his 

sleep as a result of an epileptic seizure.      

It goes without saying that the shock 

and devastation were overwhelming. 

Our grief was made worse by the fact 

we had never heard of SUDEP – sudden 

unexpected death in epilepsy, it was 

not even on our radar. At that time any 

information we had read about epilepsy 

did not mention this situation. We did not 

know then people could die directly from 

a seizure. We approached his specialist 

to find out if Matt was aware of this 

possibility and his response was that 

“he did not remember telling him about 

SUDEP, he does not usually talk about 

it as it increases people’s anxiety, but if 

Matt had asked him about it he would 

have discussed it with him.”  This made 

us very angry. We would say “How do 

you get the answers if you do not know 

the question to ask?” 

We will never know whether Matt had 

all the information he needed to make 

fully informed choices about managing 

his lifestyle or taking medication. He 

was an intelligent mature adult who 

was very capable of doing that. The 

information may not have prevented his 

death but for our family it would have 

been some comfort to know he had all 

the information he needed and a realistic 

understanding of the risks, as our 

daughter has had with her asthma.

After Matt’s death various people gave 

us an enormous amount of support and 

information, in particular Rosemary 

Panelli who has had a long association 

with Epilepsy Bereaved and the Epilepsy 

Foundation in Victoria.  From her I 

learned that epilepsy related deaths 

at that time were recorded differently 

around Australia. In rural areas due to 

lack of resources they were often not 

recorded as related to epilepsy at all. 

She also gave me the opportunity to put 

Matt’s story in this wonderful booklet 

about SUDEP which was published 

by Epilepsy Australia and Epilepsy 

Bereaved and launched in 2005. I would 

encourage you to read it for a better 

understanding of the issues associated 

with sudden unexpected death in 

Marg Callaghan

                Marg Callaghan, Robert Cole (Epilepsy Association of SA & NT), 

Russell Pollard (JECA) and James Bidgood MP

Sen Gary Humphries

Sen Helen Kroger

The Earl Howe, 

Chairman of the All-

Party Parliamentary 

Group, Houses of 

Parliament, London

“As Chairman of the All-Party 

Parliamentary Group on Epilepsy here 

in Westminster, I wanted to let you know 

how much I welcome the news of the 

recently formed Australian Parliamentary 

Friends of Epilepsy group and to 

congratulate you on what you have 

already achieved. 

Our own experience is that the All-

Party Group has played a valuable role, 

not least in informing parliamentarians 

but also in being able to focus the 

minds of ministers and officials at the 

Department of Health on epilepsy as 

a policy area of significance. We have 

achieved this both by inviting ministers 

periodically to attend our meetings and 

by submitting reports to them with solidly 

researched recommendations.

 In the chambers of both Houses of 

Parliament we have been instrumental in 

initiating debates on epilepsy which have 

undoubtedly been of value in raising the 

profile of the condition.

On behalf of the UK All-Party Group, 

I am delighted to associate myself with 

the work of the Parliamentary Friends of 

Epilepsy in Australia and send you and 

the members of the Friends every good 

wish for your future success.”

Frederick Howe

Susanne Lund

President

International Bureau 

for Epilepsy

“IBE is very pleased to support the 

terrific work being undertaken by the 

Joint Epilepsy Council of Australia, IBE’s 

Full Member in Australia. We are aware 

that for many years epilepsy associations 

in Australia have been working to 

improve the quality of life for people 

with epilepsy, in both medical and social 

terms…

We were delighted therefore to learn 

of the development of the Parliamentary 

Friends of Epilepsy Group and its efforts 

to encourage the Australian Parliament 

to bring about lasting changes for people 

with epilepsy in Australia. This is in 

line with IBE vision of the world where 

everywhere fear and ignorance about 

epilepsy are replaced by understanding 

and care.

IBE recognizes the important support 

provided to JECA by the Parliamentary 

Members, in particular, Ms Jill Hall, 

Member for Shortland and Mr Mark 

Coulton, Member for Parkes, and would 

urge them to continue to support this 

important initiative.”

Messages of support 

from our international 

colleagues

Sen Gary Humphries, Graeme Shears (Epilepsy Foundation of      

Victoria) and Jacinta Cummins (Epilepsy ACT, Chair of JECA)

Denise Chapman (Epilepsy Australia, NSW) and                                 

Sen Gary Humphries

Sen Helen Kroger, Sue Healy (President, Epilepsy ACT) 

and Mark Coulton MP

Dr Lindsay Vowells (President, Epilepsy Australia),                     

Glenys Coates (parent) and James Bidgood MP

Helen Whitehead  (Epilepsy Queensland) and Mike Simon MP

Jill Hall MP and Russell Pollard (Epilepsy Australia) 

Sen Catryna Bilyx and Marg Callaghan

Parliament House

18 September 2008

Rosie Panelli (JECA) and Nigel Berry (Disability ACT)

Keynote address to the 

Parliamentary Friends of Epilepsy 

meeting 18 September 2008.

” 

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