flame issue 3 - 2014

the flame Issue 3 – 2014

the newsletter of epilepsy queensland inc

LittlePoss

Appeal

My Epilepsy

Story

Darren’sDay

2014insi

de.

..

The Flame is published quarterly by Epilepsy Queensland – www.epilepsyqueensland.com.au

cont

ents 2-3 .............in brief

4-5 ............. my epilepsy story, by Gerrard Gaudiello

6-7 ............. events & fundraising: darren’s day 2014, little poss appeal, purple ball 2015

8 .................. Karin Borges - oil reseach

9 .................. 30 minutes with: Dr Lindy Jeffree

10 ............... Martin Raffaele story, memorial service

11 ............... ask an educator

12 ............... neurosigma approval story

14 ............... memorial service

15 ............... donation page and diary dates

16 ............... spring challenge

in brief

FOGS DONATE CAR TO EPILEPSY QUEENSLANDThe Former Origin Greats is a nonprofit organisation founded by the late Richard

“Tosser” Turner.

The FOGS members are the elite group of players who have represented Queensland at

State of Origin level. As well as supporting the State of Origin series and assisting in the

development of Rugby League in Queensland, FOGS also raises funds to help charities.

FOGS has generously donated a Toyota Corolla to Epilepsy Queensland to assist with our service provision in the Queensland community.

For example, we will use the vehicle to travel to support patients and families, and to provide talks to schools and organisations about

epilepsy.

We are especially grateful to FOGS Executive Chairman Gene Miles and his team for this very welcome donation. The car was formally

handed over by our Patron Wally Lewis to CEO Helen Whitehead at the State of Origin lunch before the first Origin match this year.

Epilepsy Queensland Issue 3 – 2014 © epilepsy queensland inc 3

LONDON: Scientists have developed an “off-switch” for the brain to effectively shut down neural activity using light pulses.In 2005, Stanford scientist Karl Deisseroth discovered how to switch individual brain cells on and off by using light in a technique he dubbed ‘optogenetics’.Research teams around the world have since used this technique to study brain cells, heart cells, stem cells and others regulated by electrical signals.However, light-sensitive proteins were efficient at switching cells on but proved less effective at turning them off.Now, after almost a decade of research, scientists have been able to shut down the neurons as well as activate them.Deisseroth’s team has now re-engineered its light-sensitive proteins to switch cells much more adequately than before. His findings are presented in the journal “Science”.Thomas Insel, director of the National Institute of Mental Health, which funded the study, said this improved “off” switch will help researchers to better understand the brain circuits involved in behavior, thinking and emotion.In the upper left opsin, the red colour shows negative charges spanning the opsin that facilitated the flow of positive (stimulatory) ions through the channel into neurons. In the newly engineered channels (lower right), those negative charges have been changed to positive (blue), allowing the negatively charged inhibitory chloride ions to flow through. “This is something we and others in the field have sought for a very long time,” Deisseroth, a senior author of the paper and professor of bioengineering and of psychiatry and behavioural sciences said.“We’re excited about this increased light sensitivity of inhibition in part because we think it will greatly enhance work in large-brained organisms like rats and primates.”The new techniques rely on changing 10 of the amino acids in the optogenetic protein.“It creates a powerful tool that allows neuroscientists to apply a brake in any specific circuit with millisecond precision, beyond the power of any existing technology,” Insel explained.This technique could help scientists develop treatments for patients with some brain diseases as it could allow problematic parts of the brain to be switched off with light and tackled with minimal intrusion.Merab Kokaia, PhD, a professor at Lund University Hospital in Sweden who has used optogenetics to study epilepsy and other conditions praised the research.“These features could be much more useful for behavioural studies in animals but could also become an effective treatment alternative for neurological conditions where drugs do not work, such as some cases of severe epilepsy and other hyper-excitability disorders,” he said.

Source:Kokaia M, Andersson M, Ledri MAn optogenetic approach in epilepsy Neuropharmacology. 2012 Jun 12.

Scientists have built an ‘off switch’ for the brain

l Now, after almost a decade

of research, scientists have been

able to shut down the neurons

as well as activate them.

Interstate visitorsIt was great to have fellow service providers Freda Bjarnoe, State educator from Epilepsy Tasmania, and Lisa Roulestone from Epilepsy ACT visit with Epilepsy Queensland.

It was a wonderful opportunity to support one another, learn from each other and share resources. We certainly hope we can continue to collaborate with all of the state epilepsy organizations to strengthen our fight for people with epilepsy to help bring epilepsy out of the shadows.

l Lisa Roulestone

l Freda Bjarnoe

Epilepsy Queensland Inc is proud to announce that we have been certified for the Human Service Quality Standards.

Grateful thanks to our members and service recipients who so generously gave of their time to be interviewed by the quality auditors.

4 Epilepsy Queensland Issue 3 – 2014 © epilepsy queensland inc

‘I just love Dr. Sandstrom!’ These are words that remain with me long after listening to Gerrard Gaudiello’s journey with epilepsy. What a wonderful story I’ve heard, and how grateful this young man is to his parents and to his neurologist.

Diagnosed with epilepsy at 17 years of age after his first tonic clonic seizure, Gerrard’s world came crashing down. He believed epilepsy was a childhood condition, one that couldn’t affect him. Why, became a mystery, there was no apparent cause, with eventually receiving a diagnosis of ‘adult onset epilepsy’. Dr. Sandstrom is Gerrard’s neurologist, a man who he is most grateful to, a man who was so generous with his time and support and someone Gerrard would highly recommend to others.

Gerrard’s journey started with some feelings of déjà vu in 2006 when he was in year 10. We all know what they are like, something that is a little weird, but something that often doesn’t bother us. But for him, they came often, made him feel very ill and interrupted his school life; he was unable to concentrate on his work. This was a vital time in his schooling as Gerrard was entering his Senior years at St. Joseph’s College, Gregory Terrace.

He was having some trouble with his vision; his eyes were crossed requiring glasses. This has since corrected itself.

It wasn’t until year 12 in 2008, that Gerrard experienced his first tonic clonic seizure. He describes that as ‘hell’, his muscles felt like he had run a marathon, a feeling like nothing he had experienced before! One of the most difficult things for Gerrard, was to learn that he came out of that seizure swinging punches and was quite violent.

Gerrard was started on anti-seizure medication such as Epilim and Keppra but nothing seemed to stop his seizures.

He was experiencing many seizures that interrupted his schooling as well as travelling to and from TAFE College, where he was undertaking a Diploma in Tourism. A bad day for Gerrard was after 4 or 5 seizures that left him exhausted, needing sleep to recover.

As he spoke with me, he experienced ‘big’ memories of the ‘walking seizures’, where we would ‘wake’ from an absence seizure to find himself in someone’s backyard and being yelled at by the owner, or having missed a train station or a bus stop. With no memory of time lapsed, life became frustrating and complicated for Gerrard.

Now at TAFE studying his diploma of tourism, Gerrard continued with difficulty. His friends helped out a lot, they could see when he was having a seizure and were able to calm him down and keep him safe. He found these seizures scary! He would fall out of bed many times during tonic clonic seizures at home, his Dad would hear the thumps!

He graduated from TAFE triumphantly, but not without losing things dear to him. Gerrard loved to ride his bike and defiantly did so even when his seizures, absences and drop seizures were uncontrolled. He has stories of ‘waking’ from one seizure to find an ambulance in attendance bandaging his cut hand. Gerrard speaks of his lost freedom at this stage, as riding his bike became too much of a risk, although he continued to ride around the local reservoir where it was safer.

Medication, perhaps the Tegretol and Topamax, in the early stages became a problem for his health and self esteem, as Gerrard gained a lot of weight. Dr. Sandstrom was tearing his hair out because nothing was working it seemed, though finishing TAFE was a treat!

His general health was not good; he looked and felt constantly tired. His memory suffered, often not being able to string a sentence together was frustrating.

Gerrard has been disciplined about recording in his seizure diary all through his epilepsy. He was very excited eventually when there was a day, then a week of seizure freedom.

The next steps of his journey proved to be the scariest, as Dr. Sandstrom suggested going to Melbourne to have brain surgery. Gerrard was frightened of the suggestion; let alone of what was ahead for him.

Courage prevailed and he was off in late 2012 to have some ‘work up’ done at the Austin Hospital in Melbourne with Professor Gavin Fabinyi.

For 2½ weeks, he was taken off his medication and had some video monitoring where he experienced a few absence and tonic clonic seizures. He was able to view the video of the tonic clonic he experienced, and although shocked, Gerrard was feeling a little more assured now that he was in safe hands.

Gerrard was now on track for surgery to be performed by Professor Fabinyi, but not before some more tonic clonic seizures. This time, there were some psychotic events attached to them. Some more scary feelings and no control! Thinking the nurses were his old school friends, and some imaginary thoughts supported more post-ictal moments that were scary and took some extra recovery.

A couple of CT scans, EEGs, a MRI with a movie to watch to entertain him, psychiatric tests and puzzles were all part of the work up. Gerrard was explained the risks, an 80% chance of success. When they found no lesion, the risk was reduced to 50% chance of success. Gerrard was not put

My Epilepsy StoryGerrard Gaudiello


off, but happy to continue with the surgery, encouraged and supported by his parents, family and friends. Dr. Sandstrom was elated that he had decided to go ahead!

“I was scared, I was only 18, but I had to do it, it was no longer a want, but a need!”

A week before surgery, Gerrard went to see Wally Lewis. Wally was able to further allay his fears about having surgery. Gerrard was nervous arriving at Channel Nine studios and walking into his childhood hero’s studio but Wally was so welcoming and supportive, all went well. He had spoken to Wally previously on the phone but this time, Gerrard realized just how down to earth and generous Wally really is. “We (my Dad and I) spent over an hour with Wally, he told me not to worry, gave me lots of tips, like ‘when you wake up after surgery you are going to have a big headache so don’t be afraid to ask for medication’.”

My dad organised this visit and I am very grateful to him and to Wally for his time and generosity.

Before his surgery, Gerrard went to see the Australian Ballet perform ‘Swan Lake’. His cousin is one of the principal dancers in the Ballet Company. He enjoys going to the ballet and looks forward to more opportunities with his cousin.

One of the things Gerrard remembers well before the surgery was the flight down with Qantas with his parents, and sharing a beer with his Dad. Six days before the surgery Gerrard had his last seizure, because since then he hasn’t had another. Gerrard is still seizure free! He had been warned not to drink alcohol for six months after surgery. Gerrard asks, ‘Do you know how hard it is to stay alcohol free when at the races?’ He was one year ‘post surgery sober’ and Gerrard knows he can’t ‘binge drink’ because of his epilepsy, so he doesn’t and rarely has a drink now.

The morning of the surgery arrived. Gerrard had spoken with the doctors, all the tests and scans were completed so all was on track for this day; February 28, 2013! He posted on Facebook, receiving my ‘likes’, all his friends wished him luck and offered their prayers for his speedy recovery. He was nervous as you can imagine, so the

anesthetist gave him something calming. His parents were there for support too.

“Unbelievably, I am awake, with a massive headache; I woke up, and thought I’m alive! It’s not a dream. I saw Mum and Dad, had a huge lump on my right side of head, but no black eye until 2 days later.”

Gerrard spent 1 week in hospital, some 10 days or so in a Melbourne hotel, and had lots of pain relief. He saw the surgeon two days after that and was told all went well.He now has a little less peripheral vision in one eye as a result of the surgery. He was also wearing a shaved head after surgery, self inflicted to ‘balance’ up the look! Gerrard felt very proud of his scar (it had 40 staples holding it together) and wanted the world to see it!

He has written in his seizure diary each day, ‘seizure free day’ until there was 6 months of seizure freedom, and then posted on Facebook! Everyone was excited! Then he went riding his bike!!

He got his certificate to drive after 12 months of seizure freedom, but he still needs to receive his licence to drive.

Wally had told Gerrard that he may get depressed after surgery, so he was prepared for that. He is on the road to recovery in that area and looks forward to reducing his medication shortly.

Great news for Gerrard, he has a job now. Not in tourism just yet, but as a secretary for a medical practitioner. Donna-Marie Blair from EPIC Employment is responsible for assisting Gerrard on his journey to employment throughout this time and he cannot speak highly enough of her.

He has been back to Melbourne for his 12 month check up and all is well. Gerrard is currently taking Tegretol slow release and Topamax, fish oil and is currently weighing in at 81 kgs. He proudly puts that down to reduced medication and exercise.

“I’m happy! I’m so happy that my parents encouraged me to have surgery, that Dr. Sandstrom encouraged me to have surgery, that my friends and family supported me, that Wally Lewis gave me his support and his precious time, that The Austin Hospital’s team of doctors

and nurses were there to help and support. I now have a normal life. I’d encourage anyone to explore the opportunity, don’t be afraid, the results can far outweigh the risks”.

Although, not everyone’s epilepsy can be altered by surgery, it is well worth having the conversation. Gerrard realises that his epilepsy has not been the most difficult within this spectrum disorder (some people have a much more difficult time with their seizures). However he is most grateful to have his life back and looks forward with hope. He feels better; his memory is returning to normal and he is not always looking tired and lethargic.

“Epilepsy has changed my life; surgery has changed my life for the better. I try not to take anything for granted anymore!”. Gerrard’s advice is to live life to the fullest, there is always someone worse off than yourself, and you only live once, so take the chance.


events & fundraising

A huge THANK YOU to our good friends Les and Kathy Elms and the wonderful Caloundra Bowls Club for nominating Epilepsy Queensland as the beneficiary of Darren’s Day - 2014.

Since sadly losing their son, Darren, as a result of his epilepsy in 2005, Les and Kathy have hosted an annual Bowls Day and have raised over $80,000 for Epilepsy Queensland!

The day would not be the huge success it is every year without the support of those who travel from far and wide to enjoy the afternoon of bowls, auctions, raffles and entertainment. A special thank you to everyone who attended and also to the Caloundra Bowls Club management, staff and patrons.

Darren’s Day 2014


You, your school, workplace or business are encouraged to support Epilepsy Queensland’s campaign to raise funds to help continue our vital services and programs.

The Little Poss Appeal is also aimed at increasing community awareness of epilepsy with our campaign to …bring epilepsy out of the shadows.

Since 1969 Epilepsy Queensland’s mascot Little Poss (who has epilepsy as some possums do!) has helped children learn about epilepsy and how to deal with seizures, medication, teasing and schoolwork.

How you can help?

The Little Poss Appeal involves the sale of merchandise including pens, badges, keyrings and awareness wristbands - plus a new gorgeous plush possum and hand puppet. This is a simple yet meaningful and fun way to not only raise funds but also increase community awareness, both of which are of enormous benefit to people living with epilepsy.

Each order comes with a compact counter display box, Little Poss stickers for staff of retailers to wear and promotional posters. As the merchandise is sent on consignment - there is no cost to you! Banking details and information about returning the unsold stock will be included with your order.

Other ways to help?

1. If you are not able to assist by selling merchandise this year, you may prefer to simply make a tax deductible donation or encourage others to donate or sell Little Poss merchandise at their workplace.

2. Arrange at work, school or play, a Little Poss Theme Day or Morning/Afternoon Tea in exchange for a gold coin donation – a “P” party perhaps or serve “possum patty cakes”?? Nothing is imPOSSible!

3. Become a Little Poss Hero by setting up your own online fundraising page with www.everydayhero.com.au/event/EQI_Fundraising. This is an easy and fun way to encourage friends, family, work colleagues and businesses to help you reach your personal fundraising target.

4. Help Little Poss celebrate his birthday during September by hosting your own Little Poss Birthday Party and donate the proceeds as a birthday present to Little Poss (Epilepsy Queensland).

If you would like more information on how you can help us (including stepping through the simple process to become a Little Poss Hero), please contact us.

Phone: 07 3435 5000 or 1300 852 853 (Regional Queensland)

Email: [email protected]

Or register online at www.epilepsyqueensland.com.au/site/littlepossappeal

Epilepsy Queensland would like to thank the following for their kind and valued ongoing support:

Little Poss Appeal

State Epilepsy Awareness Campaign - September Epilepsy Queensland needs your support!

ANNOUNCING THE PURPLE BALL

Our inaugural Purple Ball will be held on 28 February 2015 at the Victoria Park Golf Club. The ball has the theme of “Unmasking

epilepsy”.

We are keen to make this a fantastic event and a fitting

launch to our Purple Campaign.

Can you or someone you know help?

• Become a sponsor – corporate sponsorship packages start at

$3,000

• Donate prizes for raffles and auctions

• Book a table – or buy individual tickets

Get ready to party!!

For further information or to offer your assistance, please call our office on 3435 5000 or email [email protected]


30 minutes with

Approved and new dietary options for the treatment of refractory epilepsy – Clinical trials Yvette McMurtrie, Client Services Coordinator, Epilepsy Queensland, Brisbane

Karin Borges, PhD; Senior Lecturer, The University of Queensland, Brisbane

The current dietary options, the Modified Atkins and Ketogenic Diets, are effective in treating seizures in individuals who can adhere to the relatively strict regimens. However, both diets require medical supervision and restrict daily food. Also, even though results for Modified Atkins and the Ketogenic Diet are good, few patients achieve complete long term seizure freedom.

Simpler and effective dietary options for the treatment of epilepsy are needed. Triheptanoin is a novel approach, which would be more straightforward and could be added to a “normal” diet supervised by a dietitian. It is now important to find out if triheptanoin is tolerated by patients with epilepsy and the extent to which some patients can achieve better control of seizures. Depending on the results from the clinical studies in Melbourne and the US, larger clinical studies may be initiated in the future to find out which types of epilepsy best respond to treatment with this novel oil.

Triheptanoin

A novel metabolic approach to reduce seizures has recently been found to be effective in animal models of epilepsy and seizures. Since 2012, it has been tested in adult drug resistant epilepsy patients at the Royal Melbourne Hospital. A new clinical trial has just started in children at

the Royal Children’s and Mater Hospitals in Queensland. The Royal Melbourne Hospital is looking for patients of 16 years or older with treatment resistant seizures and the two Brisbane hospitals are looking for patients of 8 years or older with treatment resistant seizures to participate in the trials. There are also trials in the USA in children and adults with epilepsy due to glucose transporter 1 (GLUT1) deficiency.

Triheptanoin is currently being developed based on the assumption that energy metabolism is deficient in “epileptic brain tissue” and that the nerve cells cannot produce enough ATP (basic cellular fuel) to maintain a stable membrane potential. Energy-deficient cells are prone to depolarise and subsequently initiate seizures. There is now increasing evidence that there truly is a lack of energy in “epileptic tissue” from epilepsy patients and certain animal epilepsy models (Borges and Sonnewald, 2012; Kovac et al., 2013). Patients with some disorders of fat metabolism appear to have similar problems in energy metabolism. To address their energy shortage, triheptanoin (triglyceride of heptanoate, a seven carbon fatty acid) oil can be added to the diet and symptoms largely improve (Brunengraber and Roe, 2006, Roe and Mochel, 2006). Children and adults with these fat metabolism disorders tolerate the oil well and so far there have been no severe adverse events attributed to triheptanoin.

Triheptanoin is a synthetic, stable and tasteless oil, which currently is not commercially available. When added to a “regular” mouse diet, it reduced the susceptibility to seizures, as well as spontaneous seizures in four different mouse seizure models (Willis et al., 2010, Thomas et al., 2012, Kim et al., 2013). For the mouse studies, 35% of the caloric energy content was provided as triheptanoin, which related to 17g of oil per 100g mouse diet. The clinical trial at Royal Melbourne Hospital aims to find out how much triheptanoin oil can be tolerated by adolescents and adults with drug resistant epilepsy when added to a normal diet and if seizures can be reduced. In humans, this might equate to about 30-60 ml of oil per day added to the normal

diet, depending on how much oil can be tolerated and how much food is eaten per day. Patients enrolled into the clinical trials receive counselling and support from a registered and skilled dietician and nurse. They are taught how to eat healthily and how to incorporate triheptanoin into their regular and/or preferred foods. If effective, triheptanoin treatment would be ideal for patients with epilepsy in the developed and developing world, because: 1) triheptanoin does not require refrigeration and is straightforward to add to meals and 2) it is not expected to have significant side effects if added to food.

For more information on either the ketogenic diet, the modified Atkins diet or Triheptanoin please contact the

services team at Epilepsy Queensland on 1300 852 853 or visit the website www.epilepsyqueensland.com.au

Patients interested in the clinical trials of triheptanoin can contact: The Royal and Mater Children’s Hospitals in Brisbane.

Patients interested in the Modified Atkins Diet should contact their doctor or doctors at the hospitals. A Modified Atkins diet and Ketogenic Diet program is available for children at the Royal and the Mater Children’s Hospital Brisbane.

Conflict of interest: Karin Borges has applied for a US patent for the use of triheptanoin as a treatment for epilepsy, which has been licensed. She is directing the clinical studies at the Royal Melbourne Hospital together with Professor Terence O’Brien and at the Royal and Mater Children’s Hospitals in Brisbane together with Dr. Sophie Calvert. Yvette McMurtrie has no conflicts of interests. Research into the use of triheptanoin has been funded by the Australian National Health and Research Council, Citizens United for Research in Epilepsy, The Epilepsy Therapy Project, Parents Against Childhood Epilepsy, the American Epilepsy Foundation and a Thrasher Research Award (grants to Karin Borges).

Simpler and effective dietary options for the treatment of epilepsy are needed...“

research


1. What inspired you to become a neuro surgeon? I am fascinated by the logic and complexity of the way our brain works so I was interested in neurological research, but I also really like working with my hands and was attracted to the craft and technical aspects of surgery. Having done medicine, then gone back to the laboratory for some time, I really missed talking to patients and hearing their stories and the instant gratification of operations that go well.

2. Where did you do your training? I studied medicine at the University of Melbourne and the Royal Melbourne Hospital, then did my neurosurgical training in NSW and Canberra, so I’m gradually moving north.

3. If you had not become a doctor what would you have most likely become? Research scientist

4. What is your greatest achievement? Passing my neurosurgical final exams with 2 children under 5 while working a busy, 1 in 2 call roster.

5. What do you see has been the biggest change in epilepsy care since you starting working in Neurology? Lack of neurologists, support staff and infrastructure to workup patients for epilepsy surgery.

6. Where would you most like to travel? India, though when I get a chance to travel I usually head for the Australian bush.

7. What is your favourite food? Baked potatoes (and chocolate)

8. What is the best book you have ever read or who is your favourite author? I’m reading all the time and there are so many good authors it’s hard to pick just one. A couple of standout books are “Swallows and Amazons” by Arthur Ransome, which was my childhood favorite, and “Espedair Street” by Iain Banks.

9. Describe your most embarrassing

moment. There are so many….

Particularly, I’m always muddling up

names and faces.

10. Who is the most famous person you

have met or would like to meet? I’d love

to meet David Attenborough. He’s done

so many amazing and interesting things

yet still seems to be a very genuine and

down to earth character.

11. What style of music do you like to

listen to? I’m not a very discriminating

musician. I think my favorite music is folk

–rock, such as Paul Kelly and My Friend

the Chocolate Cake.

12. Do you have any interesting

hobbies or pastimes you would like

to tell us about? When I get time, I love

mucking about in my garden.

13. Name one thing that you feel would

improve the epilepsy care in QLD? A

properly resourced statewide surgical

epilepsy centre.

14. What is your hope for the future of

Epilepsy care? That we can reduce the

stigma such that an epilepsy diagnosis

is no more of a problem than asthma or

high blood pressure.

Dr Lindy Jeffree

Dr Lindy Jeffree is Director of Neurosurgery at the Royal

Brisbane Hospital, and Senior Lecturer at the University of

Queensland. She specialises in surgery for primary brain

tumours and for epilepsy, although she is also involved

in research into motor neuron disease, brain metastases

from breast cancer, and ventriculoperitoneal shunts

for hydrocephalus. She moved to Brisbane for a public

hospital appointment and loves it here because she can

ride to work and has a yard big enough for chooks.

30 minutes with

l Lindy hiking with her family

Simpler and effective dietary options for the treatment of epilepsy are needed...

I was first aware of experiencing focal seizures in my early twenties when irregular brain activity began to result

in convulsions of up to a minute in length. By 1997, the frequency of my seizures increased to as many as seven Complex Focal Seizures each week. For a period of eight years, I was to take every possible antiepileptic medication available at that time, combining as many as three medications at their maximum dosage. In October 1998, following the earlier suggestions of a neurologist, I experienced the first Partial Temporal Lobectomy operation with the intent to reduce seizure activity. In 1999, I began to study a music degree at The University of Sydney, believing surgery had ‘cured’ my epilepsy. However, seizures were to return after 10 months.

I began to experience seizures in July 1999 following the removal of one of the three antiepileptic medications I was taking prior to surgery. As this is a side-effect that individuals with epilepsy may experience for a short period following the removal of a medication such as Neurontin (gabapentin), health professionals decided to firstly observe whether these symptoms would stop by themselves. Following an extended period of convulsive seizures, I underwent a further period of neurological examinations. Following these, the recommendation of health professionals was that I experienced a second operation on this area. This was because the original elective surgery to remove the damaged tissue in the left temporal lobe had been inadequate. In November 2000, the second operation took place.

In mid-2001, I once again commenced experiencing seizures every 2-3 weeks. My neurologist later informed me that this was the result of lesions on the right temporal lobe. An operation on the right temporal lobe could not be possible because the partial removal of both temporal lobes

would see me being unable to retain memory for longer than 15 seconds in duration. Reduced self-confidence accompanied the need to find new medications that may control my seizure activity. It was only following stopping and saying to myself, “Having one seizure every two weeks is far better than seven each week”, that I was able to start thinking positively about the future. I decided I must start doing things that would reduce my negative focus on epilepsy. As education was the method I used to achieve this following my first surgery, I chose to do the same in 2002. However, this time the focus of my education changed from music to studying epilepsy and understanding the reasons why people in different societies poorly judge individuals with this disability.

It has been my tertiary studies over the last 12 years that has maintained most of my attention. During this period I have studied four degrees; Bachelor of Arts (BA), Graduate Diploma in Psychology (GDP), Masters in Philosophy (MPhil), and presently waiting for the marking of my Doctorate of Philosophy (PhD) thesis to be completed. My goals now are to use my personal experience and knowledge on epilepsy to offer greater education and understanding about this chronic illness to people in all social environments.

Martin_Raffaele_PhD_AbstractSubjective Well-Being in Men Following Neurosurgery for Adult Onset Epileptic Seizures

Abstract

Subjective Well-Being (SWB) in men following neurosurgery for Adult Onset Epileptic Seizures (AOES) is a major indicator of health related quality of life, including social or community participation. Neurosurgery is elective treatment for the control of partial seizure activity. Lived experience with elective

surgery for AOES is under-studied, although the evidence from relevant studies would inform social and health professionals support interventions with people with AOES. Men with AOES are a special population in their risk for vulnerability to social perceptions by self and others that restrict their participation in preferred roles.

This study aimed to determine how the SWB of men with AOES surgery is constructed around family relationships and health professional relationships, both medically and psychologically post-surgery. Other aims were to evaluate the perceived influence of social networks on SWB and determine how coping skills of men with AOES following elective surgery impact SWB.

This study applied an in‐depth, semi‐structured interview process with each of five male participants who experienced partial seizures resulting from temporal lobe damage, to investigate how their SWB was affected by elective surgery for AOES. It sought to address the questions how (a) family relationship wellbeing is impacted for those with AOES, (b) health rehabilitation consultation relations may change post-surgery for AOES, (c) participation in social networks is influenced and (d) post-surgery internal perception and coping strategies influence SWB. The data were thematically analysed using a hermeneutic and interpretive phenomenological analysis approach to explore these emergent meanings from the rich description prompted by those questions.

Men following neurosurgery for AOES experience both resources for and obstacles to SWB within relationships in the family, health and social network environments. Within family environments

Martin RaffaeleMy experience/ outcome from surgery


they experience resources conducive to SWB through higher respect, and obstacles that depend on members’ understanding of the level of direct support needed post-surgery. Within health environments, they experience positive resources through a reduction in the frequency of medical consultations to attain medications and obstacles due to gaining limited knowledge of the direct result of surgery and access to counselling therapies. Within the social network, they experience resources through the assistance of social support groups and obstacles resulting from exclusion by societies in which they were a member pre-surgery.

A conceptual model in which external and internal perception factors are considered appears to explain the direct effects on SWB in men with AOES following neurosurgery.

Implications of the findings for post-surgery rehabilitation, including psycho-education for the patient, family members and the social network include acceptance of post-surgery results and higher understanding of the patient’s needs. An inclusive psycho-education programme can enhance stability within all social environments, removing barriers that may have arisen as the result of AOES and surgery. Understanding issues including what adjustments to living space are needed for the individual post-surgery, and what influences their aspirations to participate or exclude themselves from social interaction may heighten SWB.


I am always reading stories in your magazines and in the newspaper of people who have had epilepsy surgery. How do I know if surgery is appropriate for me and can you have the surgery in Queensland?

Medication can control seizures in most people with epilepsy, but for about 30% of patients, they do not gain full seizure freedom or the side effects of the medications are intolerable. In some cases, epilepsy surgery may be an option.

Epilepsy surgery is an operation on the brain to control seizures and improve the person’s quality of life. There are three main types of epilepsy surgery:

• Surgery to remove the area of the brain producing seizures

• Surgery to interrupt the nerve pathways through which seizure impulses spread within the brain

• Surgery to implant a device (such as a VNS) used to treat epilepsy.

Surgery is considered only if the area of the brain where the seizures start, called the seizure focus, can be clearly identified, and if the area to be removed is not responsible for any critical functions, such as language, sensation and movement. Extensive evaluation and testing are necessary to determine if surgery is appropriate.

Epilepsy is sometimes caused by an area of abnormal brain tissue. There are many reasons why an abnormality occurs and it may be unimportant unless it causes seizures. The size and position of the area, referred to as the epilepsy focus, varies

between individuals. If surgery can remove the epilepsy focus, seizures can often be prevented. The chance of successful surgery and the risks of complications differ for each patient.

What Surgical Options Are Available?

Different surgical procedures are available to treat epilepsy. The type of surgery used depends on the type of seizures and the area of the brain where the seizures start. The surgical options include:

• Lobe resection• Lesionectomy • Corpus callosotomy • Hemispherectomy

Surgery is usually only used where medication fails and is not intended to be a substitute for medication. If surgery is considered to be a possible treatment for your epilepsy, several months of extensive testing and counselling are undertaken before surgery is performed. Your doctors will then discuss with you, the possible outcomes and potential risks from surgery in your case, so that you can make an informed choice. Successful surgery can prevent seizures from occurring, or dramatically reduce seizure frequency and thereby change a person’s life forever.

Surgery is an option for people living in Queensland and it can usually be done in Brisbane, although some people may need to travel to Sydney or Melbourne.

Epilepsy Queensland can provide you with specialised literature on this topic. Please contact the services team if you would like to talk further about epilepsy surgery.

ask an educator


NeuroSigma Receives Approval from Australian Therapeutic Goods Administration to Market its Monarch™ eTNS™ System for the Adjunctive Treatment of Drug-Resistant Epilepsy

LOS ANGELES, April 1, 2014 /PRNewswire/ -- NeuroSigma, Inc., a California-based life-sciences company focused on commercialization of its non-invasive Monarch™ eTNS™ System for the treatment of neurological and neuropsychiatric disorders, today announced that it has received approval from the Therapeutic Goods Administration (TGA) to market its Monarch™ eTNS™ System in Australia. The approval allows NeuroSigma to market the Monarch eTNS System for the adjunctive treatment of drug-resistant epilepsy (DRE) in patients nine years of age and older.

DRE is a serious medical disorder, and affects approximately 30% to 37% of all patients with epilepsy. The Monarch eTNS System is a non-invasive adjunctive therapy for DRE that delivers low-intensity electrical current through a single-use adhesive patch to stimulate branches of the trigeminal nerve near the surface of the forehead. Patients may conveniently self-administer the therapy at home and typically use the device while sleeping. The Monarch eTNS System will be sold by prescription to patients in Australia under a physician’s supervision.

TGA approval was supported by data generated in Phase I and Phase II clinical trials in the United States measuring safety and efficacy. Results from a Phase II randomized controlled trial of eTNS for epilepsy were published in the February 26, 2013 issue of Neurology®, the medical journal of the American Academy of Neurology.

Mark Cook, M.D., Chair of Medicine, St. Vincent’s Hospital in Melbourne, Australia noted, “I am pleased that eTNS is now available to be prescribed for the treatment of drug-resistant epilepsy in Australia. I have been following with interest the experiences that my

colleagues in Europe and Canada have had with their patients and look forward to prescribing eTNS to my patients.”

“We are very pleased to have received TGA approval to market our Monarch eTNS System for the adjunctive treatment of drug-resistant epilepsy. I look forward to working with Dr. Mark Cook and other epilepsy thought leaders in Australia in introducing the Monarch eTNS System to major epilepsy centers in Australia,” said Greg Brooks, Chief Commercial Officer of NeuroSigma.

“This approval is another major milestone for NeuroSigma and enables us to bring our non-invasive therapy to a new physician and patient population in Australia. NeuroSigma intends to make eTNS available in relevant markets worldwide,” added Leon Ekchian, Ph.D., President and CEO of NeuroSigma.

Background – The Monarch eTNS System from NeuroSigma

In August 2012, NeuroSigma received CE Mark approval to market NeuroSigma’s first TNS product, the Monarch™ eTNS™ System in the European Union, for the adjunctive treatment of drug-resistant epilepsy (DRE) and major depressive disorder (MDD) for adults and children 9 years and older. In addition, the Monarch™ eTNS™ System also received a Class II medical device license from Health Canada in April of 2013 allowing NeuroSigma to market the system for treatment of DRE and MDD for adults and children 9 years and older. NeuroSigma is currently offering the Monarch™ eTNS™ System to patients in the European Union and Canada with a physician’s prescription.

The Monarch™ eTNS™ System is composed of a cell phone-sized pulse generator and a single-use patch that is applied to the forehead. Signals are transmitted

through lead wires to the patch in order to stimulate the trigeminal nerve in the skin of the forehead; triggering these nerve fibers sends signals to targeted brain regions and changes the activity there. Patients may conveniently self-administer the Monarch™ eTNS™ System at home and typically use the device while sleeping.

Background – TNS

The trigeminal nerve is the largest cranial nerve, offering a high-bandwidth pathway for signals to enter the brain, bilaterally and at high frequency. The trigeminal nerve projects to specific areas of the brain, such as the locus coeruleus, nucleus tractus solitarius, thalamus and the cerebral cortex, which are involved in epilepsy, depression, PTSD, ADHD and other disorders.

Trigeminal Nerve Stimulation (TNS) is the electrical stimulation of branches of the trigeminal nerve, which are located near the surface of the forehead. Functional neuroimaging data suggests the mechanism of action of TNS is related to its ability to modulate activity in targeted brain regions.

CAUTION: In the United States, eTNS™ is an investigational device and is limited by Federal law to investigational use. The U.S. Food and Drug Administration has given NeuroSigma approval to proceed with a pivotal Phase III clinical trial of eTNS in drug-resistant epilepsy. Completion of that Phase III study is necessary before the FDA will consider permitting the marketing and sale of eTNS in the United States.

eTNS, Monarch, and Monarch eTNS are trademarks of NeuroSigma, Inc.

About NeuroSigma, Inc.

NeuroSigma is a Los Angeles-based life sciences company established to develop TNS technologies with the potential to transform medical practice and patients’


New plan to slash waiting times for Queensland seizure patients

If patients are adequately treated and properly informed about their condition early on, they have a better chance of having a well-controlled condition. Obviously if there is a long wait to see a specialist and to get a diagnosis, then there is a greater chance that things can go wrong.

Prof Gericke said his previous practice in European countries taught him the value of early treatment for people with suspected epilepsy. In the UK, for example, he said the standard was for new patients to be seen within two weeks. In Queensland a priority system is currently in operation and some new onset seizure patients have to wait up to a year to see an epilepsy specialist.

A new clinic is about to slash specialist waiting times for people who have suffered their first epileptic seizure from one year to two weeks.

QUT School of Public Health and Social Work Adjunct Professor Christian Gericke, also CEO of the Wesley Research Institute, and Royal Brisbane and Women’s Hospital (RBWH) neurologists Professor David Reutens, Associate Professor Lata Vadlamudi and Dr Jim Pelekanos received $75,000 from the QUT-based Australian Centre for Health Services Innovation (Ans HSI), to evaluate a new first-seizure clinic at the RBWH.

The full article can be found here:

https://www.qut.edu.au/about/news/news?news-id=66778

lives. NeuroSigma is focused on TNS

neuromodulation therapies based on

intellectual property licensed on an

exclusive basis from the University of

California, Los Angeles (UCLA), including

TNS therapies for epilepsy, depression,

post-traumatic stress disorder (PTSD)

and attention-deficit hyperactivity

disorder (ADHD). For more information

about NeuroSigma, please visit www.

neurosigma.com

Forward-Looking Safe Harbor Statement

This press release contains forward-

looking statements, including but not

limited to, research and development

outcomes, efficacy, adverse reactions,

market and product potential, product

availability and other statements

regarding our eTNS™ system. These

statements are based on current

expectations of future events. If underlying

assumptions prove inaccurate or unknown

risks or uncertainties materialize, actual

results could vary materially from the

Company’s expectations and projections.

Risks and uncertainties include, among

other things, general industry and

medical device market conditions;

technological advances and patents

attained by competitors; challenges

inherent in the research and development

and regulatory processes; challenges

related to new product marketing, such as

the unpredictability of market acceptance

for new medical device products;

inconsistency of treatment results

among patients; potential difficulties in

manufacturing a new product; general

economic conditions; and governmental

laws and regulations affecting domestic

and foreign operations.

SOURCE NeuroSigma, Inc. l Dr Jim Pelekanos, Associate Professor Lata Vadlamudi and Professor Christian Gericke

WE RESPECT YOUR PRIVACYWe hope you enjoy reading the enclosed Flame Newsletter. However, if you no longer wish to receive the Flame, please let us know

by calling 07 3435 5000 / 1300 852 853 (Regional Queensland) or emailing [email protected] would also greatly appreciate being advised if you have received multiple copies at the same household,

so we can update our records accordingly. Thank You!


SAMi Night Time Epilepsy Monitor Helps Track Night Time Seizures by Editors on May 21, 2014 • 1:19 pmPeople with epilepsy, and particularly children, are at risk of hurting themselves at night if a seizure happens. Moreover, when trying to monitor seizure occurrences, it’s hard to detect ones that happen while the person and everyone else in the house is sleeping. The Epilepsy Foundation (USA) has developed a special night time camera, called SAMi, that pairs with a smartphone application via the home’s wireless network to provide active monitoring of a sleeping person.

When the person is sleeping, infrared, nearly invisible LED lights illuminate the bed. A night-time camera records video and when it recognizes sufficient sustained motion it triggers an alarm on the caretaker’s smartphone. The smartphone then switches to video and audio mode, letting the parent or guardian see and hear what’s going on in the other room. Additionally, all movement is recorded and suspected seizures are highlighted within the app for quick review later and to share with a doctor.

For further information go to http://www.samialert.com/

We are always on the look out for new technologies. Keep in mind that these may not be available in Australia or may still be in developmental phases.

Epilepsy Queensland’s Biennial Memorial service was recently held at Riverglenn Conference Centre, 12 July and was aptly celebrated by Rev. Dr. Cecilie Lander. We came together again this year to celebrate the lives, and remember those who have died from causes relating to epilepsy.

Mr. Lawrie Knott bought his gift of music and song to the celebration and we enjoyed the loving space he created.

As Dr. Lander read out the names of those who have died, including Nathan Britton, Andrew Cook,

Polly Cummins, Tegan Ham, John Heston, Brendan Krause, Andrew Ladyko, Daniel Landrigan, Amanda Martin, Tayla McErlane, Bronwyn McInnis, Jane Robinson, Nicholas Stapleton, Kelly Thompson, Denis Wright, we sat together with our memories, our poems, and expressions of gratitude, hope and prayers.

One poem, which was read in memory of Daniel, leaves a message that we can carry with us.

We wish to thank Rev. Dr. Cecilie Lander and Mr. Lawrie Knott for their wonderful gifts of service. We wish to thank everyone who attended our Memorial Service, especially sharing in this important day. We appreciate the opportunity to join together in memory and celebration of those who have died from epilepsy. And we look forward to the wider community joining us for future gatherings where we can share and support each other.

‘For lost friends’

As twilight makes a rainbow robeFrom the concealed colours of day

In order for time to stay aliveWithin the dark weight of night,

May we lose no one we loveFrom the shelter of our hearts.

When we love another heartAnd allow it to love us;

We journey deep below timeInto that eternal weave

Where nothing unravels.

May we have the grace to seeDespite the hurt of rupture,

The searing of angerAnd the empty disappointment,

That whoever we have loved,Such love can never quench.

Though a door may have Closed between us,

May we be able to viewOur lost friends with eyesWise with calming grace;Forgive them the damage

We were left to inherit,Free ourselves from the chains

Of forlorn resentment;Bring warmth again to

Where the heart has frozenIn order that beyond the walls

Of our cherished hurtAnd chosen distance

We may be able to celebrate the gifts they brought,

Learn and grow from the painAnd prosper into difference

Wishing them the peaceWhere spirit can summon

Beauty from a wounded space.

Memorial Service

21 August 16 October 18 September 27 November

2014 Understanding Epilepsy Workshops (Woolloongabba)For Disability Support Workers, Child Care Workers, Nurses, Allied Health Professionals, Volunteers, People with Epilepsy and their Families.

28 August Toowoomba27 November Cairns

2014 Regional TripsFor Disability Support Workers, Child Care Workers, Nurses, Allied Health Professionals, Volunteers, People with Epilepsy and their Families.

1 September Little Poss Appeal and Epilepsy Spring Challenge begins

4 September Epilepsy and intellectual/developmental disability: the keys to successful management(PA Hospital)

12 September Lend Lease Golf Day (Indooroopilly Golf Course)

13 September Little Poss’s Birthday Party (Toombul Cinemas)

20 November Queensland Epilepsy Symposium (QUT Gardens Campus)

1 December AGM and Awards Ceremony (Queensland Cricketer’s Club)

28 February 2015 Brisbane’s Purple Ball (Victoria Park Golf Club)

Regular Support Group Meetings For further information please contact Charlene Mundy at Epilepsy Queensland

2014 diary dates


Please call 07 3435 5000 for further information on any of the above events

I would like to help Epilepsy Queensland!

I would like to join Epilepsy Queensland $28.00 Concession membership $35.00 Ordinary membership $50.00 Family membership

$70.00 Community/School membership $85.00 Corporate membership

PleasefindenclosedmyTaxDeductibleDonationof:

$25 $50 $100 My Choice $

ORPleasecharge$monthlytomycreditcarduntilotherwiseadvised

PAYMENT AND ADDRESS DETAILSDONATIONSOF$2ORMORETOEPILEPSYQUEENSLANDINCARETAXDEDUCTIBLE

Pleasefindenclosedmycheque/moneyordermadepayabletoEpilepsyQueenslandInc

Please debit my: Visa Mastercard

Cardnumber: Expirydate: Cardholder’sname: Signature:

Mr/Mrs/Ms/Miss/Dr: Company: Address: Suburb: Postcode: Phone: Email:

Pleasereturnthisslipwithyourmethodofpaymentto—Epilepsy Queensland Inc, PO Box 1457, Coorparoo BC Qld 4151

Iaminterestedinvolunteering. PleasesendmeinformationaboutrememberingEpilepsyQueenslandinmywill. Pleasesendmeinformationabout`InMemoriam’or‘Celebratory’gifts. PleaseaddmetoyourENewsBulletinsList(myemailaddressislistedabove).

Thank you for your contribution!

ABN: 42 025 269 961

A Tax Invoice will be issued on receipt of fee and approval of membership

&

(must provide copies of concession card with form)

po box 1457, coorparoo bc qld 4151phone 07 3435 5000 1300 852 853 (outside brisbane) fax 07 3435 5025email epilepsy@epilepsyqueensland.com.auwww.epilepsyqueensland.com.auABN 42 025 269 961

Opinions expressed in this publication are not necessarily those of Epilepsy Queensland. Questions and concerns about your condition, its treatment and management should be directed to your doctor.

Information on products should not be regarded as an endorsement or recommendation of these products.

© Epilepsy Queensland Inc. This publication is subject to copyright laws. No part may be reproduced by any process without prior written permission from Epilepsy Queensland Inc.

After the cooler winter months, are you looking for some motivation to put the spring back into your step?

Why not join Epilepsy Queensland’s staff, volunteers and supporters who are all challenging themselves either individually or as part of a team/family/school/community group/workplace during the 91 days of Spring.

You can register as an individual or join up with your family, friends, colleagues to make it a team challenge - the more the merrier!

Choose your own ‘91’ themed challenge for one day or over the 91 days of spring - physical, healthy, educational or maybe sacrificial - for example:

] Swim, walk, ride or run 9.1 kms or 91 kms or do 91 minutes of an activity every week

] Give up chocolate, coffee, sugar, alcohol, favourite TV show or game, soft drinks, $1 a day, swearing (or anything else that will be a real challenge!) for 91 days

] Bake and sell 91 cupcakes] Do 91 good deeds, give out 91 Seizure First Aid posters or tell 91 people

about epilepsy] Read/write 91 poems, draw 91 pictures or learn 91 new words - maybe

in a different language] Give 91 hugs, kisses or compliments] As a team lose 91 kilos or raise $910] The list is endless!

To help achieve Epilepsy Queensland’s challenge, participants are asked to raise a minimum of $91 (that’s just $1 a day - less than a cup of coffee or can of soft drink!). There are great prizes/awards for those who do!

You choose how to fundraise, for example:

• Collect donations/sponsorship• Make tax deductible donations yourself • Sell Epilepsy Queensland raffle tickets - or run your own raffle• Host your own fundraising event/activity - which would be as simple as a

morning tea or BBQ at home and charge $9.10 • Create your own online Everyday Hero Fundraising page

It’s easy to set up, manage and promote to your friends, family and contacts

It’s convenient for you, the donor and Epilepsy Queensland

It allows you to tell your own story and why you are supporting Epilepsy

Queensland

Help is always available from the teams at Epilepsy Queensland or Everyday

Hero.

All approved participants will be issued a Reconciliation Form which

contains information on how to easily bank and keep track of funds raised.

10 easy steps to help you Step Up for Epilepsy:

1. Decide if you are going to participate as an individual or as part of a team

2. Choose your challenge

3. Choose how you wish to fundraise - set an ambitious yet attainable goal

4. Download, complete and return the Registration Form or Register online

5. If hosting a fundraising event/activity (excluding collecting donations/

sponsorship) - be sure to let us know so that we can approve your event/

activity and provide you with the relevant guidelines and authority to

fundraise

6. Receive Reconciliation Form

7. Plan, organise and promote your fundraising

8. Encourage and motivate others to help you achieve your goal/challenge

9. Have fun and celebrate your successes!

10. Bank/send funds and Reconciliation Form to Epilepsy Queensland no

later than 5 December 2015.

For further information, support and advice - call Epilepsy Queensland on

07 3435 5000 or email [email protected]

So...Can you Step up for Epilepsy and raise $91 or more for Epilepsy

Queensland?

By raising funds and awareness you will be helping Epilepsy Queensland to

reach out to more people and families living with epilepsy.

Epilepsy Queensland’s 2014 Spring Challenge

flame issue 3 - 2014

Documents