Blog

The Power of Leaders

 

 

 

So. I’m halfway through my business trip to Australia. Traveling is a passion of mine. However, rather than fly to the other side of the world for just 6 days as I did in Oct 2017 (which, without going into too much detail, caused me to become exhausted, which then led to my first TC in 2.5 years…!). I’m in Australia for a month in total, which, as I’m sure you can imagine, is a tad torturous.

Publically speaking with firms (and enjoying sights) in Perth, Melbourne, Canberra, and Sydney I speak to leaders who need to be less afraid of disability. It turns out that speaking of a horrid condition such as epilepsy can be motivating as well as educational – for both company leaders as well as team members.

Why travel to Australia again you might ask? I partially grew up in Sydney and have lived in Melbourne also, so I always feel drawn back to my second home. I also have clients/business associates/family/friends in each of the cities mentioned above.

Of course, epilepsy affects those from every background and within each and every country of the world. Motivating and educating corporate leaders regarding disability is particularly valuable and impactful; there’s a large number of people that they employ internationally, their corporate responsibility and indeed the resulting positive effects on not just employee health and productivity, but society in general.

You may or may not have read the guest blog by my ex-boss Leanne Flux (date: 26 Mar 2018), with whom I used to work. Leanne taught me to believe in myself. She wasn’t just my manager but was an inspiring, motivational leader. The person who made me believe in myself.

My positive experience with Leanne is something that I think of at least every other day. She has done and still does inspire me. We all have those select few in our lives who are positively impactful.

Pushing oneself forward professionally through personal stubbornness alone is not sufficient to maximise anyone’s happiness or long-term productivity.

We all need and deserve leaders who respect us and treat us as equals (with none of that ridiculous discriminatory nonsense). Leanne led and encouraged me. I was an intelligent, ambitious, well-read, honest, open-minded professional who always went “the extra mile. The whole “epilepsy business” did not define me.

Just 2 weeks after commencing my first role within the firm, I was asked what I wanted to achieve within my career and was positively shocked at Leanne’s level of support. I expected a “No, you aren’t qualified to transfer overseas. You don’t have a degree; you’re “just” a secretary” (which, at the time was my job title). Leanne supported me to become only the second person within the global firm to win a promotion overseas.

As incredible as the above is, the is no reason for anyone who is decent, professional and hard-working not to be supported by their manager, whether their disability is epilepsy, dyslexia, autism, a physical or mental illness… I could go on.  We all have potential and to not be encouraged or guided by a leader would be shameful (and to be quite frank, rather silly (should a firm care about productivity, staff retention, PR, and occasionally good-will)).

Do you have any Managers/Leaders that have been supportive despite your disability? If so, let me know!

Torie Robinson

Neurological vs Psychological

 

 

 

 

 

 

Perth, Australia, April 2018

Perth is a beautiful city. Clean, well-constructed, multi-cultural and very friendly. It’s so much more relaxed than say London, Sydney, Melbourne, Tokyo or Hong Kong! I have struggled to find cafés with WiFi late in the evening or at the weekend – because the culture is so much more chilled! It has really gotten me thinking: it’s essential to for everyone to regularly experience calm and to have a work-life balance. But for those of us with epilepsy, it’s even more important.

Today, I received a note from a professional acquaintance regarding an upcoming conference, stating his “understanding” that epilepsy was a mental illness. This made me sigh. Even within the corporate world, amongst the millions of employees – many of whom are highly “educated” – the misbelief that epilepsy is a psychiatric health issue is prevalent. I have encountered this misbelief a fair few times over the years, but the lack of understanding of such a common condition continues to surprise me. I have met people who state, with a tone of conviction, that they “know” epilepsy is a psychiatric health condition. And then the conversation really begins.

 

 

 

 

 

Misunderstandings and misbeliefs are two of the key reasons for my work. It’s why publicly speaking regarding epilepsy and disability as a whole provide me with such a sense of fulfilment. The look of shock on many members of the audience’s faces continue to prove our necessity to continuously learn and not trust information from unreliable sources. Through ongoing research, our medical understandings and treatments for neurological conditions are constantly evolving – just as they are for psychiatric and physical illnesses.

Psychiatric health conditions are of a common occurrence amongst those with epilepsy. It is understandable. Imagine your brain recurrently “zapping itself” with ridiculous charges of electricity, that seizures that are causing your body to tense its muscles (leaving  aches like that after a marathon or 5), that you are just “not there”, that you have “accidents” with your bodily functions, that you fall on a railway line, that you’re prevented from driving, that your seizures stop you from breathing, etc.. Or even that you’re constantly tired just because of the drugs that you take and that you have to work extra-hard to remember information*. Suffering from epilepsy in any of these ways can be rather depressing and anxiety-inducing (to say the least). The seizures, the medications, their effects on your life, and then the negative reactions of others can be traumatic.

People here in Perth are affected by epilepsy, as they are in Melbourne, New York, Cape Town, Zurich, Delhi…it’s a condition affecting those from all nations. May employers and other institutions bring employees together through communication and education.

To end on a positive note, Perth people and indeed the gorgeous wildlife (!) have been very welcoming. I look forward to presenting to firms in Melbourne – my next stop in Australia.

Torie Robinson

Website: torierobinson.com 

*Not everyone with epilepsy experiences these symptoms and the list does not cover all side-effects of seizures, medication or societal misunderstandings

 

Perth on one of its many fine days

Managing and Supporting An Employee with Epilepsy

Leanne Flux    BSc (hons)     MSc      MBPSs       AssocMISP

Introduction

I am a Business and Coaching Psychologist accredited as an Occupational Psychometric Tester (Personality & Ability).  I am currently doing a PhD in Professional Practice: Psychological Perspectives and working fulltime as an HR Manager/Clinical Manager for West Kent YMCA.

I am no expert on epilepsy but having training in the scientific study of the brain and human behaviour, as well as being so incredibly privileged to have worked with Torie Robinson who suffers from epilepsy, I’d like to share my experience and thoughts around epilepsy and the workplace.

True Story

The story begins when I first met Torie back in 2008.  I was working for a Corporate in London and was recruiting for an additional member to my team.  In walked Torie, she was great, she met all the criteria we were looking for in skill and expertise as well as a superb attitude to fit in with the rest of my team.  I genuinely cannot remember exactly when Torie told me that she suffered from epilepsy.  Whether she mentioned it at interview or after, but to be honest, it really did not matter at all.  All I was concerned about was how we (myself, the team and the organization) could support her so that she could put her fantastic skills to good use. And do that she did!!

To me it was a no brainer……once she was within our employ, I took time to understand the challenges she felt she faced and what kind of support we could offer her.  I remember she mentioned that if she felt a seizure coming on she would let me know and all I needed to do was to ensure that no one interfered and was kept away from her until the seizure was over.  So we placed her desk near to a meeting room, that if she felt the need she could let me know and remove herself from the open plan office.  We discussed how much she wanted the rest of the team to know. Fortunately, Torie’s communication skills are excellent so I felt that I did not have to do any research or reading up on epilepsy.  I trusted that she would guide and advise me on what was best for her and on what she needed as support so that I could then find the best and most viable way to support her with as little disruption as possible.

I do clearly recall the day that Torie arrived at work with cuts to her face and a very badly bruised black eye.  She looked like she had been beaten up and that ‘they’ had won!   She informed me that she had had a seizure whilst waiting for the train and had fallen onto the tracks.  But what I did note was that she was there, in the office, ready to work, reliable, professional, 100% committed and that it was her choice to be at work.  It was important to me that she felt she could speak up and not feel pressured into working if she was not up to it. Even though Torie suffered from epilepsy it did not need to define her or make her any less of a valued member of my team, and I tried to treat her no differently than the rest of the team.

The Facts

There are around 74 million people worldwide who are being affected by the common neurological condition epilepsy, and around 1% of the working population in the UK suffers from it.  I understand that it varies from person to person.  During a seizure, brain function can be temporarily disrupted…. and that is the key…..it is temporary! In general, it does not lead to brain damage.  It does not make the individual mentally ill.  It’s a seizure, the individual recovers and then continues to be a functional being, with feelings. It is not contagious and certainly in most cases does not impact cognitive ability to do a job and do it well.

What Can Be Done?

In my opinion the answer here is very simple.  Emotional Intelligence!

  • Self-awareness – A clear understanding of your own character, as a member of staff or manager. Knowing your limits, your feelings and frustrations, thereby ensuring that any unnecessary negative thoughts around various subjects are not coming through to the relevant individual.
  • Self-regulation – The ability to react to the progressive demands of what is being experienced, with emotions that are socially acceptable and flexible as needed.
  • Motivation – Understanding of why you react the way you do in specific situations and how that reaction may positively or negatively impact others around you.
  • Empathy – The ability to understand how others around you are feeling, what kind of support they may require and being able to share your thoughts and feelings with others in a positive light.
  • Social Skills – Being aware that verbal communication is not the only way to convey feelings and ideas. Our beliefs come through in the way we interact with others non-verbally, such as facial reactions, gestures, body language and even the tone of your voice.  You may be saying that something is ok or acceptable, but your non-verbal communication being conveyed to them may be saying the opposite.

 

Self-Fulfilling Prophecy

Further to this, Emotional intelligence links into a psychological concept called ‘self-fulfilling prophecy’. This occurs when an untrue thought impacts a person’s behaviour in a way that the belief becomes a reality in the end. The more you tell a person that they are unable to function like others, the more you stigmatize them and the likelihood is the individual will start believing you. For example; when a manager verbalizes their low expectations of their employee who suffers from epilepsy or any form of ill health really, over time the employee will tend to meet that reality and perform more poorly in the workplace than they otherwise may have.  Therefore, the expectations of the manager (or work colleagues), creates a definition of the situation that becomes acceptable to both individuals which in turn influences the behaviour of the employee.  It is not all doom and gloom though, as with the use of Emotional Intelligence it can be swung around to create a positive self-fulfilling prophecy.  This can be done if the manager, (or work colleagues) instil the belief in the individual that they are a valued and respected member of staff and that any form of illness does not define them.  Thereby creating loyalty between both parties and instilling a sense of support rather than judgment.

Leanne Flux    BSc (hons)     MSc      MBPSs       AssocMISP

Find Leanne on LinkedIn

 

 

Purple Day – What That Means

 

 

 

 

 

 

Brain with too much electrical activity…

Purple Day is about Epilepsy. We nabbed the colour purple. Hey, why not?!

It shouldn’t be required for us to have one specific day to talk about the most common neurological condition in the world (sigh!), but, it’s fantastic that we have it. Let’s chat. Talk to your friends, family, employers, colleagues – and if you don’t fancy doing that/feel that you can’t, just know that there are 73,999,999 other people who also have epilepsy. We give you virtual hugs.

If you have 2mins, please check out my video (below) – it’s real, it’s personal and it’s from the heart.

For those who’d like to support us in any way, please post this blog wherever you see fit, present it to your employers, your families, friends, etc.

If you’d like to support those affected by epilepsy, please contact Epilepsy Action (those in the UK), or Epilepsy Western Australia (those in WA).

If your employer (corporate), school, college, uni require any info on this, just give me a shout.

 

Seizure Freedom Is A Funny Thing

A quick intro to Clair:

  • Location: South London, UK
  • Profession: Occupational Therapy Assistant
  • Also: Founder of EpilepsyBumps.com, and Accredited Volunteer at Epilepsy Action
  • Favourite food: Roast beef and Yorkshire pudding
  • Favourite activity: Exploring outdoors with her kids
  • Favourite singer: Ed Sheeran (at the moment!)
  • Favourite book: Elephant Girl
  • Greatest inspiration: Helen Keller

Random Fact: “I used to ski race at kids morning with a girl who went on the be on the Great British ski team!”

 

Seizure freedom is a funny thing, from the moment you are told by your doctor “you have epilepsy“  it becomes the ultimate goal.  Life revolves around drug choices, lifestyle changes even surgery all striving for seizure freedom, for a normal life again.

I remember waking up from so many seizures saying “now I have to start all over“ and no one helping me at that moment could understand.  They see the end of that seizure as their goal, that I am “better” when I am fully conscious and physically recovered.  But for me the seizure itself is less important, it’s the huge set back in seizure freedom that it represents that hurts more.

No one really understands this concept until you are counting down the days to that magical seizure-free year when you get your driving licence back and suddenly don’t seem such a risk to everyone around you.

But what does seizure freedom really feel like? Is it the ultimate goal? Does life just return to normal?  I hate to shatter the dream but unfortunately, it’s not quite that easy.

Please don’t get me wrong seizure freedom is amazing, being able to drive again, being able to apply for jobs without having a huge occupational health interrogation, not having to worry about having a seizure every day.  These things are amazing, and I am so thankful that currently I am four years seizure free.

But I have been two and half year’s seizure free before and then a tonic clonic seizure has stolen all that happiness.  And the longer you go seizure free the more choices you have to make that will be shattered if you do have a seizure.

Do I take a job that if I have a seizure I will lose or at least will be limited in?  Do we move house to a better area for schools but worse for public transport?  Do I sign my kids up for clubs that I need a car to get to?  The impact of a seizure isn’t just on me anymore but my kids as well.

Everyone says you should live your life to the full but it’s not always that easy when there is so much to lose if you chose to change your life so that you are reliant on that seizure freedom.

And there are so many threats to seizure freedom, you could forget a dose of your medication and have a seizure, easily done when seizures aren’t a daily threat and you are trying to “get on with life”.

You could have a tummy bug and can’t keep your medication down, or take another medication for another problem that interacts with your meds and causes a seizure.  Then there is travelling and jet lag, running marathons, high temperatures, having a drink or two or three… how much can you stress your body before it causes a seizure… whatever the cause of the seizure everything is reset, and you lose everything you have gained from the previous seizure freedom.

On top of all this pressure to stay “seizure free“ and live life to the full, you also start to feel like a fraud sharing your worries with other people whose epilepsy is far worse, people who are battling seizures on a daily basis.  You start to feel out of place in epilepsy forums and groups, like your worries are so less valid than people with active epilepsy so you keep these worries to yourself (probably another reason you could have a seizure).  So, who do you share these worries with?

Seizure freedom while amazing in so many ways can be at times very lonely and isn’t as easy as it might seem to the outside world.   But there are lots of us in this boat so keep talking, keep sharing your epilepsy experience and your worries because it raises epilepsy awareness and I find helps to keep me sane while living in that no man’s land of “seizure freedom“.

By Clair Cobbold

Founder of EpilepsyBumps.com

My New Neurologist

(I couldn’t find a picture so chose this one from last week – the painting is by my friend Gillian Burrows)

My “old” Neurologist was, the best. A man who was not only up-to-date on the latest developments, who saved my life through identifying me as someone potentially suitable for surgery, who was there on call should I have needed him, but, someone who CARED. Someone who was interested in the whole of my life and not just my seizures. It was clear to me that he didn’t identify me just as a person with epilepsy.

In the past, I had had some moody, un-knowledgeable, snobby and disrespectful neurologists, from whom the only question I received was “How many seizures have you had?”. Upon reflection, their attitude showed their lack of knowledge when it came to epilepsy. Unfortunately, at the time, the way that they treated me contributed to my feelings of shame regarding my epilepsy; making me feel like I was a waste of their time and a burden to society.

Due to more research, with each year, there is an improved, greater understanding of epilepsy by Neurologists in general. Having said that, the more respectable intellectuals learn, the more and more they realise how little they actually understand!

My new Neurologist (from the same hospital as the former Neurologist – Hospital for Neurology & Neurosurgery, UCL) I met for the first time today. As you can imagine, I was pretty nervous – she had a lot to live up to! But, she was lovely. I’d make same notes prior to my appointment (so that I didn’t forget anything!!) and she was keen to answer any questions that I had. She wanted to know how I was, not just how my epilepsy was.

You know when you can really tell if a Neurologist cares about you? This woman cared. I explained that I’d be travelling to do public speaking re epilepsy in Australia and she was so encouraging – although at the same time a little concerned(!). She suggested that I take Clobazam (a drug I also take to avoid clusters of seizures after an initial tonic-clonic) the day prior to my trip, the day of travelling and upon the day of arrival (and then the same travelling back to the UK). My new Neurologist is there not just to help control my epilepsy but to help me live my life. Now that is how all doctors should be.

I’ll be going to Perth, Melbourne, Canberra and Sydney!! I can’t wait! 

If your doctor isn’t as brilliant as those I’ve described from the Hospital for Neurology & Neurosurgery, then I suggest that you look elsewhere. Get the treatment that you deserve!! If you are getting fabulous treatment then tell your Neurologist/provide them with feedback. Us humans always seem to be very eagar to complain whilst not always appreciating the good!

Does anyone else have tales about a great Neurologist? Let me know!!

Take care everyone.

Torie 🙂 xx

 

PS Please post this blog on your social media/let your employer/college know about us!! Let’s spread the word about epilepsy!

 

Challenging Public Awareness & Perception of Epilepsy

 

12th February is International Epilepsy Day. What does that mean you might ask? Well, to me it’s a clear opportunity for all those affected by – and indeed so far not affected by – epilepsy; to learn about the condition. To chat and educate regarding overactive brains!

 So many people, including many of those already affected by epilepsy just don’t realise how common the condition is. The fact that between 1 in 100 to 1 in 103 people (depending upon from where you source the figures) have epilepsy, is staggering to most. Say that it’s 1 in 100, aka 1% of the human population: that equates to 74 MILLION people worldwide. That’s greater than the population of the UK.

I spoke to a chap a few weeks ago, who told me that in the whole of his 70+ years, in which he was well-traveled and educated, he’d never met anybody with epilepsy. This saddened me because what it really meant, was that not one, out of all of the thousands of people that he’d met all over the world in his lifetime had been open about their epilepsy. Imagine the loneliness and shame felt by many. Things are better today than they were 70 years ago, but we still have a way to go.

I didn’t need further encouragement, but it’s coming across people like this man which do nonetheless encourage me to continue speaking about epilepsy publicly.

My Last Cluster

I last had a tonic-clonic seizure (one of the 40+ types of epileptic seizure) back in November 2017, upon return from a 6day business trip to Australia. Many are surprised when they hear the “business trip” part – for surely somebody with epilepsy couldn’t be in a position which requires an international business trip, right?! I’d actually been on Noongar Radio 100.9fm talking for 2 hours about epilepsy and meeting with Epilepsy Western Australia too! How ironic the story becomes…

It had been a productive and exciting trip but also exhausting and due to jet-lag, I hadn’t gotten enough sleep. This, of course, was a perfect recipe for a seizure…

The auras prior to the tonic-clonic were awful. I laid on the bed, trying to chill, but feeling scared. Then, there was: “nothing”.

I “woke” from the tonic-clonic seizure lying on the en-suite floor feeling: “off my face”, exhausted and very upset. I also had a very sore nose (I don’t know how I bashed it) and carpet burns (I have no recollection of how I got from the bed in the bedroom, across the carpet floor, and then into the en-suite). Anyway, I hadn’t had a tonic-clonic for 2.5 years and so I was gutted. I was whacked for days afterward and my nose didn’t recover from the bashing it received until this month (Feb 2018).

    

 

I’m stubborn, so the day after the seizure I was on my way to a meeting in London and the day that, on my way to lecture at a London university:

     

But, I was also sleeping a LOT! I had a few auras in the week following as well until my brain “calmed down”.

 

Epilepsy and Discrimination

Comparing epilepsy to mental health difficulties I feel to be rather apt because although epilepsy is neurological rather than psychiatric, many people with the condition suffer from similar societal discrimination. Both neurological and psychiatric issues are “stuff” going on in the brain and uneducated people often fail to see past hair, skin, and bone.

As a society, we are improving in recognising the neurological condition epilepsy for what it is: a complex illness. Many of us are involved in research to enable our Neurologists and Epileptologists to better understand and treat epilepsy. There are many events taking place globally regarding the condition (e.g. 4th International Conference on Epilepsy & Treatment in Zurich, which I’m speaking at!), but we all need to help share the further understanding and treatment options with the general public. We must not tolerate the continuing unfair discrimination still faced by many.

 

Epilepsy isn’t catching. It doesn’t make somebody possessed or evil. Taking lots of drugs daily and being tired as a result doesn’t make someone lazy. Epilepsy doesn’t define a person with the diagnosis. It’s something for us all to challenge each day, together.

Torie Robinson

International Public Speaker, Epilepsy Action Media Award Winner, HuffPost Blogger, Epilepsy Sparks Blogger

Give me a shout/follow:

    

The Brain Damaged Baron – Andy Nicholson

A quick intro to Andy:

  • Names: by day: Andy Nicholson, by both day and night: The Brain Damaged Baron
  • He’s 48 but sometimes feels 88. He’s from Lincoln, UK
  • He is: Medically retired, full-time webpage/site/Facebook blogger, vlogger
  • Hobbies: Cat whisperer, Hobnob scoffer, General of nobody imparticular, stepfather to an abandoned son, father to a lunatic daughter, husband to a lovely wife. I will have my sleep in this life and the next, pretty much permanently
  • His favourite group: Thunder
  • His greatest inspiration: Life and the quest for acceptance

Great fact: I blo*dy hate cheap teaspoons

 

Andy’s Story…

1969, late in the year. A small woman, heavily pregnant, eyes watering, pushes hard for 24 hours until out I pop. OK, I’ll skip ahead a quarter of a century…

1994, December, a building site in Leipzig, Germany. Five years after the fall of the Berlin Wall, Eastern Germany is in a hurry to catch up with the rest of its Teutonic, long separated cousin. For that reason and that reason only; hoards of British builders, fly, drive, or float over to the land of the rising bratwurst, so to speak.

And I’m one of them. Nine months pass by in the blink of an eye. Biers are imbibed, buildings are renovated, friends are made, orders are obeyed, and accidents happen.

8th of December, 6am. I enter a house on which I am working and plummet 7 metres down an open and unguarded stairwell. I land on my bonce and there was no safety helmet to cushion the fall. Essentially, I bungee jump, but in a move some would describe as foolhardy at best; I neglect to attach the bungee cord to my ankles. I’m comatose for three weeks, I have a severe brain injury and life has changed in that blink of an eye. Ten months later, I’m back in Blighty, learning to live with the new me and waiting for the next spanner to be thrown into the works. Works that have already compensated for the permanent loss of good health, the disappearance of too many friends to mention and to the realisation that I’ll never be the same idiot who went off to Germany. Still an idiot, but a whole new type of idiot.

The next spanner looms large…

The horizon fades, the view changes, reality is replaced by hallucinations and a kind of panic that is not only new but utterly terrifying. My body can’t handle it, the brain is on overload, muscles twitch and spasm and the heart rate goes off like Lewis Hamilton on a speed rush. Then, just when I can’t take any more, my body gives up. Darkness.

Hello, epilepsy. You vicious bas*ard.

Twenty years hurtle by and I DO mean hurtle. The epilepsy is 90% controlled, a happy marriage takes place and it’s time to give something back. An idea is hatched. To make films; vlogs (as the kids call them). Just my good self and a camera explaining what it’s really like living with brain injury, epilepsy, and many other related conditions. I know the score, many others know the score, but unless the brain injured, let’s call them the victims, are bedridden or wheelchair-bound, then the rest of the world never knows the truth. They never understand the reality of life when headaches are virtually permanent, memory is a lottery, words can be a struggle, anger and confusion are good friends and the ever-present threat of an epileptic seizure looms like an omnipresent being intent on ruining life for an indeterminate length of time.

Life’s a bi*ch, but I crack on. I’m not alone, there are thousands like me and the rest of the world understands not one jot. It’s time they knew. And to be honest here, let’s have a laugh about it. It’s the only way to attack it. I must laugh: if I don’t find humour in my conditions, then what’s the point? Laughter gets me by, it always has. And so, I chat about memory woes, seizures, toilet habits, friendships (or lack of), fatigue, tolerance, piles, confidence, the list goes on. And I smile a lot, particularly while my daughter is singing with me on one particular film. Why not? It’s better than wallowing in a mire of self-pity. I wallow enough in the endless drugs I need to take after visiting my dealer in the local chemist. So, here’s the reality. I’m still here, I’m still cracking on and the world needs to know what it’s really like for myself and millions upon millions of others. And please, PLEASE, laugh.

LOTS.

 

Andy Nicholson

The Brain Damaged Baron

 

 Follow Andy’s “The Brain Damaged Baron” Twitter: https://twitter.com/BrainDamagedBar

 Follow Andy’s “The Brain Damaged Baron” Facebook page: https://www.facebook.com/notesfromthebraindamagedbaron

 Check out Andy’s “The Brain Damaged Baron” website: https://braindamagedbaron.com/

 Check out Andy’s videos on YouTube

 

Caring For Those With Epilepsy – By Margaret Skeel

A quick intro to Margaret:

  • She’s 60 something, originally from the US of A (but resident of Sydney, Australia)
  • She is: a Biologist, High School Science Teacher, and Author
  • She has also: Worked in Disability Support with people who suffer from Epilepsy
  • Her favourite food: a juicy plum mango!
  • Her favourite book: Lord of the Rings by JRR Tolkien
  • Her greatest inspiration: the Buddha

Great fact: Margaret’s book is: Platypus Dreaming: The Adventures of One Lucky Platypus and Her Friends

Over to Margaret!

When I was a teenager I suffered from low blood pressure and used to pass out – and not gracefully like in the movies! Many people thought that I was having a seizure, although I wasn’t. It wasn’t epilepsy but I learnt how some people with this condition feel – you wake up feeling confused and embarrassed and people are treating you strangely. Not nice at all.

My first experience with an epileptic seizure happened when I was 18 and working for a doctor in a very poor community in Australia. A man was brought in who was having a tonic-clonic seizure that had started when he was cutting up meat. There was blood everywhere and we Assistants were told back then to hold the man down while the doctor gave him a shot -of what I don’t know. It was quite a nervewracking experience.

Years later I became a high school teacher. We were always taught to be alert when it came to students with epilepsy; but only 1 or two students in a school of over a thousand told us that they had the condition. Since we now know that epilepsy affects around 1% of the population, I know that there were probably 8 or 9 students that didn’t tell us about their condition. Of those who did tell us about their epilepsy; their meds may have been controlling their daytime seizures as no one had a seizure under my watch. We were taught what to do in case though:

  • Protect them from injury (remove harmful objects from nearby)
  • Cushion their head
  • Time how long the seizure lasts
  • Aid their breathing by gently placing them in the recovery position once any jerking has stopped (assuming the seizure was a tonic-clonic)
  • Stay with them until they are fully recovered
  • Be calmly reassuring

We also had to:

  • Alert the office so they could call an ambulance (if the seizure was going on for more than 5 minutes)
  • NOT  put a stick in their mouth!
  • Reassure the other students that their friend would be okay and then send them out of the room for privacy.

A few years ago I went into Disability Support and worked in group homes where the clients had multiple physical and neurological disabilities, and to my surprise, every one of them had Epilepsy.  Most had it under control but some suffered from what they called intractable epilepsy ( a type of epilepsy that doesn’t respond well to antiepileptic drugs (AEDs)). Even though they were on multiple medications, these people were still were suffering from lots of focal seizures and every few weeks they would have a major seizure (tonic-clonic).

I found the seizures quite unnerving at first but I learned the drill: keep the client safe and comfortable, call an ambulance if it goes on too long and assist with the recovery process.

I have heard that medical marijuana can help some sufferers. I hope that prejudices will not stop this treatment being made available to those who can benefit from it.

I make sure in my teaching capacity that I educate young people about epilepsy so that they are more understanding of those who suffer from it. I teach them that it is not catching and that it is not the work of demons. The prejudices are still there and must be countered at every opportunity.

For those of you who have this condition, I wish you all the best in the future. We will find a cure for this condition!

Margaret Skeel

Biologist, High School Science Teacher, and Author

The Birth of the Cheeky Neuron

Hi, my name is Jo Adams, and I’m a Neuroscientist from Canberra, Australia

I am fascinated by the brain. I spent over 10 years teaching undergraduate Psychology and Neuroscience sharing my fascination. During most of that time, epilepsy was largely academic to me. It was something I talked about in classes and perhaps learned about in first-aid courses. I knew people who suffered from epilepsy, but it was controlled, and therefore, kind of invisible.

This all changed in 2013.

I received a sobbing phone call from one of my oldest friends, Leah. Her three-year-old daughter, Bronte, had experienced a cluster of seizures. Along with her husband, she had spent the past few days at the children’s hospital surrounded by machines pinging, with doctors throwing confusing medical terms around and with family reassuring them ad nauseam. All the while having the bewildering aftershock of seeing their tiny daughter having multiple tonic-clonic seizures.

Leah told me that she’d hit the jackpot.

Not because of the horrendous ordeal that her daughter was experiencing and that she and her husband were witnessing (that SUCKED more than any parenting experience to date). The jackpot, she said, was that she had me and my Pharmacologist husband at her disposal. Leah’s background is Dentistry and her husband is a Business Owner. At that time, they knew very little about neurology but now they needed to know and understand more. I felt underqualified as I was no expert on epilepsy! But I knew a little academic stuff, and I wanted to help them.

Over the following couple of weeks Leah and I sat down for a Brains 101 crash course. She asked questions, and I did my best to answer them. We talked about brains, their neurons and how they work. We talked about the neuro activity of seizures and how epilepsy medications effect it. We talked about her feelings, hopes and fears for Bronte. Epilepsy was no longer academic for me!

Importantly, we talked about how best to explain to Bronte what was happening. She had a right to know – but how? We searched the web for resources but found nothing. That was when the “Cheeky Neuron” was born. With the help of a toy neuron, we explained to Bronte what was happening within her brain. She had Cheeky Neurons; they were getting too excited and chattering too much!

The return of the Cheeky Neurons

Fast forward four years; I commenced a Masters in Science Communications and chose to include a project which would connect my interests as well as make a difference in this world. As there was still very little family-targeted information available online regarding epilepsy, I chose to officially bring the Cheeky Neuron to the world.  I knew what Leah had wanted to know. Epilepsy is emotional, confronting, frightening and very often for affected families, confusing.

Epilepsy is the oldest and most common neurological diagnosis in the world. Yet, it is surrounded by fear and stigma which often hinders open conversations and subsequently general awareness of the condition.

Nix & Nellie, the Cheeky Neurons, are the medium through which I am trying to educate and reduce the fear of epilepsy for families like Leah’s. The Cheeky Neurons website reflects the questions and the frustrations that Leah and her family experienced on their epilepsy journey. It presents easily accessible and easily understandable information for families upon diagnosis. For the children who are diagnosed, Nix, Nellie and their neural network take them on a journey explaining epilepsy using colourful and fun animations. The site also features interviews with experts and provides activities and links to support groups; all packaged in an entertaining, family style.

It’s been a steep learning curve for me. As I said, I’m still no expert on epilepsy. I’m also no expert on website design, animation, interviewing experts or any of the other MILLION skills I’ve needed to get a grip on to make this happen! It’s been frustrating and at times frightening, with occasional bouts of imposter syndrome. But it’s a journey and every time I look at how far the project has come within just a few short months, it’s been worth it! Every time an epilepsy advocate or organisation follows Nix & Nellie’s Twitter feed or shares their website, it’s worth it. Every time someone affected by epilepsy writes to me to thank me for Nix & Nellie, it’s worth it.

The future of the Cheeky Neurons

We need to face facts. Children are affected by neurological disorders like epilepsy, either as those with the diagnosis, those trying to support someone, or those who witness seizures. It’s not accurate to tell them that they, or their loved ones, are “sick”. Adults can sometimes perceive themselves as being “protective” when they withhold information/any explanation of epilepsy to a child. Indeed, sometimes the adults don’t initially understand the epilepsy themselves. But, children have a right to know what’s happening, and they also have an astonishing willingness and capacity to understand and learn information when it is pitched at their level. Knowledge is how we combat the stigma and fear that surrounds conditions like epilepsy. Knowledge is power.

In the long term, perhaps Nix & Nellie will take journeys to explore other neurological issues. Maybe Huntington’s disease, Multiple Sclerosis, Dementia or Motor Neuron disease; the list is huge. If Nix & Nellie can help families understand epilepsy, or some other topic that they explore in the future then the journey is worth it, for all of us.

Jo Adams

 Follow Nix & Nellie’s Cheeky Neuron page: https://twitter.com/cheekyneurons

 Check out Nix & Nellie’s Cheeky Neuron website: https://www.cheekyneurons.com

 Check out their great video on YouTube!