#1in10Challenge – Day 4

“The PBS Schedule lists all of the medicines available to be dispensed to patients at a Government-subsidised price. The Schedule is part of the wider Pharmaceutical Benefits Scheme managed by the Department of Health and administered by Services Australia. 

This schedule is now on-line and updated on a monthly basis.” – pbs.gov.au 

One very important medicine type that is not covered under PBS is canabanoids. 

In Australia canabandoids are currently used for children with hard to control epilepsy which has many patients on it. 

Studies are currently underway for adults with hard to control epilepsy and the psychological benefits. 

This medicine could benefit so many Australians and hopefully will in the future but we currently face a spiral that withholds that help from reaching its full potential.  

Doctors are reluctant to prescribe it because of the price due to it not being covered by the PBS. 

On average, an Australian on a canabanoid medicine will spend approximately $3,600AUD out of pocket a year on that one medicine. 

Doctors don’t want to burden families with that kind of toll on their bank accounts as most Australians can’t afford that or at least not comfortably. 

The problem with this is, the government typically needs to see the demand for the medicine via enough people buying it to get it on the PBS. Of course you can’t see the demand when doctors won’t prescribe it for the price.  

This is the spiral I referred to earlier. 

I’m often asked how I feel about canabanoids and I was recently asked how I feel about canabanoids and the PBS. I fully support canabanoids and I believe the government needs to look at the studies that have been and are being conducted that will tell them roughly how many Australian this medicine could help. Use that information to get the stats they need to put canabanoid on the PBS.  

What’s the point of having such a wonderful and powerful medicine that can benefit more Australians than we currently know of if nobody can use it because they can’t afford it.

#1in10Challenge – Day 3

I’ve learnt a lot about peer support during this pandemic. 

Due to not being able to hold face to face meet ups Epilepsy Queensland (EQI) decided to hold meet ups over zoom. They also got regional Queenslanders involved which was something very new to us as there’s not a lot in the way of support groups where we are. 

Beforehand my experience with peer support, other than my mother who deserves her own peer support, was having a few close friends who didn’t understand what I’m going through. While there’s things they may not understand, that’s still a valid form of peer support. For some it’s the only support they’ll ever have. 

Social anxiety had me scared to join the group, but now? I can’t imagine life without the zoom crew. We’ve built a community of peers who know the struggles each of us face and we support each other through them. What might be hard to talk about with abled friends is suddenly much easier because you know you won’t be misunderstood. 

What I’m trying to say is that while all forms of peer support are valid, we need to do more to make peer support groups widespread and accessible.

#1in10Challenge – Day 2

It’s already well known competitive sports has an unhealthy culture on many levels, watch Athlete A on Netflix if you need a prime example, and we put pressure and value on people’s achievements rather than on the person themselves. I was once a competitive athlete, so I know this all firsthand. This is so dangerous and unhealthy but how does this relate to epilepsy you may ask?

Athletes set goals and their vision on that goal almost becomes tunnel vision. They look at what they need to do to be the best and achieve that goal they’ve set and that’s all they look at. So, when epilepsy comes flying in from the side vision that they don’t have it throws them for a spin. Some handle this better than others.

My mum was always supportive of my sporting career but she also kept me grounded and focused on other things so when my health went downhill and put my career on hold, I was devastated but it wasn’t the end of my world. Don’t get me wrong, I still feel jealousy every time I see a former team mate compete or win or somehow move forward in their career and I’m itching to be up there on a podium with them but I also know my life is worth more than just that.

Not everybody has the same mother that I do. Most athletes put their all into their goal and when epilepsy comes flying in for a surprise visit it genuinely feels like the end of their world. Especially if their education on epilepsy is poor.

I know my epilepsy education and I know my career is on hold. Once my epilepsy is managed, which is possible, I get to start working on my career again which gave me drive to keep working on managing my disease.

Some don’t know any better and believe their career is over, not even their career has changed paths, but that epilepsy has completely obliterated it. Devastation rightfully kicks in. How they handle that devastation is what matters.

While some just box up their trophies and medals and completely turn their back on their sport because that’s how they cope some don’t cope at all and end not only their careers but their lives as well.

While sporting culture has changes it needs to make, such as allowing athletes to widen their view and put their values in multiple areas, so does the medical system. When somebody is diagnosed with epilepsy, they need to start seeing a psychologist straight away for help processing what they’re going through and how they’re feeling. I felt devastated about my career holt but had to navigate that myself like we all do. I’m one of the lucky ones who survived that part of my life. If we were all given the aid we need to navigate such a distraught and overwhelming time in our lives more of us would be the lucky ones who survive.

To all my siblings that have lost their lives because the systems failed them when epilepsy knocked them down, I’m sorry. We must do better and for you I will.

#1in10Challenge – Day 1

Relationships of any kind take a hit when somebody involved is diagnosed with epilepsy.

Friends don’t know how to behave around you anymore, family don’t know how to support you and partners don’t know if they want to be in a romantic relationship, let alone a sexual one, with a disabled person.

You may not notice these things at first but it’s almost inevitable that at some point you’ll fall into one of these categories if you have epilepsy.

But that’s okay because better people come along and lift you up.

To help that happen here are five tips to help make relationships work when somebody involved has epilepsy.

  1. Be patient. This goes both ways, sometimes you’ll need to be patient after a seizure and sometimes you’ll need to be patient while they process the seizure.
  2. Be gentle. Again, this goes both ways as epilepsy takes a tole on the one with it AND their loved ones.
  3. Listen to the person with epilepsy’s boundaries.
  4. Understand the persons limits in social settings
  5. Know what to do if something happens

Epilepsy Assistance Dogs

Having an Assistance Dog in training (aka smart pupper) I get a lot of questions about what he can or will be able to do and how.

I thought it only fitting to answer one of those questions for #SeizureSmartSeptember, how can he detect seizures and what does he do when I have one?

First of all, how does he detect. Rüya has a natural ability in this area and it’s believed I let off a scent up to several hours before a seizure that humans can’t smell but some dogs can.

His reaction to this is re-enforced by positive reinforcement. Positive reinforcement is essentially rewarding your dog when they participate in correct behaviours that you would like to encourage. So, when he detects and alerts to a seizure you reward him as to encourage him to continue doing just that.

From there the dog is taught to either stay with the handler and reorientate them, go get somebody to help or roll into the recovery position but all are taught to keep the handler safe. Rüya stays with and protects me during the seizure then stays with me and reorientates me after. We considered teaching him to get somebody but I spend the majority of my time home alone so there is no one to get therefore that would be pointless. Instead he lays with me and grounds me until I feel human-ish again.

So long as the dog has been taught to protect their handler and provide them further safety and independence there’s no wrong option to choose how your dog reacts to the seizures. Any of the aforementioned options do the job the dog is there for. Even if you choose a different path to me and Rüya, we’re both in the right.

Hope this answers your questions.

Breaking Down Epilepsy Misconceptions

  1. There are over 40 types of seizures and over 100 syndromes connected to epileptic seizures. Not all seizures are the same. Not all are convulsive (falling/shaking), some are extremely easy to miss as they appear as though the person with epilepsy is just daydreaming.
  2. Despite ancient Romans going as far as spitting on the chests of epileptic people to avoid catching the disorder, it’s not actually contagious. You can’t catch it from somebody else, it’s either something you’re born with and it presents itself when its ready or you sustain a traumatic brain injury (TBI) through an accident or secondary disease which leads to epilepsy.
  3. Epilepsy is NOT a mental illness but a confirmed neurological condition. Electroencephalography (EEG) is a monitoring method to record electrical activity of the brain. An EEG can pick up a seizure or blips of seizure activity that’s not intense enough to cause a seizure. If anxiety or depression showed up on EEG’s mine would always be going haywire but they don’t.
  4. One of my Instagram followers told me that “People think I’ll hit the deck if I see a flashing light” which is not one of their triggers. In fact photosensitivity epilepsy is one of the rarer kinds of epilepsy. With that being said, you don’t know somebody’s trigger(s) unless you ask so air on the side of caution, ask, listen and respect boundaries. Also remember photosensitivity is also a trigger for a few other conditions so it’s still a good idea to be cautious when playing around with that kind of technology.
  5. Another misconception is that epilepsy is an illness or disorder, it’s not but it is a neurological condition, neuro disease or disability.

Talking to Disabled People About Disabilities

I, and many other ill and disabled people, have been asked invasive questions by total strangers on multiple occasions. It’s ableist and uncomfortable to say the least.

 

But what about friends and family? How can they ask about our conditions without falling into the same category as those offensive strangers? Perhaps how can strangers be less offensive and invasive.

 

Step one is showing from the start that you have respect for their option to decline answering. Just because they know you doesn’t mean they’re ready to share every little detail with you. This can be done by opening the conversation with “I’m going to ask you a question about your health, but I respect that you may not want to answer. I take full accountability if I overstep here.”

 

Try to know what you can before asking. For example, I’m epileptic so if you want to know what kind of seizure I have try to know the common types so you can ask “do you have tonic-clonic seizures or absence? What does that mean?”

Everyone is different when it comes to how open they are to questions and educating so self-education, even the tiniest bit, can really help and shows you genuinely want to learn for the right reasons. This will make the person more likely to open up rather than take the approach of making you educate yourself entirely.

 

Don’t start with an apology. “Sorry I don’t know much but can you please explain [insert topic].” There’s no need. We don’t expect you to know everything, sometimes doctors don’t know everything, so we certainly don’t expect you to know everything.

Instead try “hopefully this isn’t too much to answer but or can you tell me where I can find out more.”

 

Remember it’s not our responsibility to educate you on everything.

 

Be confident but not overconfident. If you’re shy and stammering because you’re scared to ask, you’re probably going to frustrate the patient. Come in overconfident and you’re going to annoy the person in question. You’re just talking to a fellow human so treat them as such.

 

Sometimes one of my friends who asks a lot of questions will come in shy and I just want him to spit it out and start to worry it’s going to be offensive but most of the time he asks me the same way he asks me what I want for lunch and it makes it a comfortable environment for the conversation which makes it much easier to answer his questions. What also helps is he has a lot of patience as I try to find the right way to answer the question.

For example, he frustrated me by asking me to lift each leg one at a time and stared at me. Big no. This made me frustrated and uncomfortable. Turns out he wanted to ask how I can move (albeit with limited motion) my leg with functional limb weakness. Once I had the question, I could actually have a conversation, without being a science experiment, and give him the answer he was looking for. However, it wasn’t until the next day that I had the perfect answer which was okay with him because he genuinely wanted to know.

In case you’re now also wondering how it works; the wires that tell me my leg is there, that I can feel it and that it has strength to stand on are mis-wired so the messages from my brain aren’t getting through but weak signals from the wires telling to move it occasionally get through.

 

This one is especially important when talking to strangers or friends/family that have only just been diagnosed or started new treatment; “Please tell me to leave/change topic if this is too much” or “I know somebody else who appears to be in a similar situation, do you mind if I ask a question.”

 

I leave you with the most important note of all, don’t make assumptions or ask blunt questions like “what’s wrong with your face?”. This is incredibly disrespectful and falls under ableist micro-aggressions. I’ve had plenty of people, friends, family, acquaintances and strangers ask blunt questions (“what’s wrong with you now?” “why do you look like that” “what did you do this time?” “why are you so skinny?” “why have you gained so much weight?” “why aren’t you eating?” etc.) and it often triggers me to go non-verbal with my autism because I feel so disrespected and unsafe.

 

Be kind, open, respectful and ready to look up resources given to you and you should be just fine.

Medical Trauma, I Want to Help

Not often enough do we talk about the harm and damage medical professionals have caused patients and their loved ones.

 

I’m now on an advisory board for CheckUP where I will speak about the injustices done to me and my community. From there the CheckUP members will discuss with their medical professionals they have on board and we will all discuss the best way to make great change in our medical system.

 

Just yesterday I was speaking to EQI staff member and my CheckUP aid member about how, while the causes are different, my undiagnosed gastro issues that seemed to be ignored at best by my first opinion gastroenterologist are bringing me back to a time where the side effects of my epilepsy medication were ignored and both have/are leaving me to starve.

 

I’m keeping an eye on my hair in case I lose it again, I’m keeping watch of my weight and my clothing sizes in case I get to where I was again. I’m scared. And not just scared to go on a rollercoaster kind of fear. I’m scared for my health and life. A fear nobody should know of but too many do, including young children.

 

I’m hoping by teaming up with CheckUP and sharing my stories others won’t have to take that uncomfortable step into speaking so publicly about their own medical trauma yet I can still help them.

 

However if you do want your story to be heard reach out to me through comments on here, contact on here or direct message on Instagram and I’ll make sure your voice is heard at the next meeting.

My Hair, I Care FUNDRAISER

Have you ever walked by a mirror and not recognised yourself?

 

That’s what my new fundraiser is for.

 

A dollar for every hair lost and every time I didn’t recognise myself in the mirror as I lost my hair due to epilepsy treatment and as I recovered. To this day, I occasionally have to do a double take as I walk by a mirror because for a split second I recognised the person looking back at me but, for the most part, I don’t recognise the person in the mirror. I see all the features that make me, I even see my hair again now, but I don’t see me.

 

My sense of identity has permanently warped me into an alien I’ll never truly recognise again. But the minute moments where I do identify the person in the reflection, it’s just as weird a feeling. I still ask, “Who are you?”

 

It makes sense to me as to why this happens.

Hair is a large part of identity to some and I lost it without control or much support.

What confuses me is, how do I get rid of this morphed image I see in the mirror and bring the real me back? It’s been 4 years since I was taken off of that treatment and allowed my hair to grow back and I still don’t know how to fix this. I thought it would fix itself in time but apparently that’s not the case.

I feel disconnected from my body and not in a dissociative manner caused by FND.

 

I’m not alone in this. People with epilepsy often lose their hair due to treatment, testing and surgery. While some own this moment in their life, many of us are left in this scary and confusing state.

 

I want to run the My Hair, I Care fundraiser in honour of my own experience and those of my community. Raising money to help our community through Epilepsy Queensland Inc. and demonstrating solidarity through people altering their hair in our honour.

 

So if you ever been in my shoes this is for you and if you haven’t you can join my team here to fundraise by getting people to sponsor you to cut, colour or even shave your hair. All are welcome here.

The Community History of: Epilepsy

Today we’re having a history lesson. I’m super passionate about the history of my people in all aspects, even if it hasn’t been very well recorded over the years due to the shame the abled world has pushed onto us.

 

The point of this history lesson is to stop people from laughing at the expense of those with epilepsy.

 

Epilepsy has been affecting people at least since the beginning of recorded history.

 

Ancient history believed epilepsy to be a spiritual condition.

The world’s oldest description of an epileptic seizure from the language use by ancient Mesopotamia, Akkadian, text and was written around 2000 B.C. The person described in the text was diagnosed as being under the influence of a moon God and underwent an exorcism.

 

Ancient Greeks saw epilepsy as a form of spiritual possession also but associated it with genius and divine instead. Epilepsy appears throughout Greek Mythology and is also commonly associated with the moon.

 

Ancient Rome didn’t share pottery with people with epilepsy in an attempt to avoid catching epilepsy. People would also spit on the chests of people with epilepsy to avoid being affected as they believed epilepsy was contagious.

 

In 1780 B.C., The Code of Hammurabi lists that slaves may be returned for if the slave were to have seizures in the first three months of ownership. The code also dictates that a person with epilepsy couldn’t marry or testify in court.

 

During the fifth century B.C. of classical Greek a physician, Hippocrates, rejected the idea of epilepsy being a spiritual related disease. He proposed that epilepsy was not divine but a medically treatable problem. Instead of referring to it as the ‘sacred disease’, as was common practice at the time, he decided to call it the ‘great disease’ instead. This decision gave rise to the modern but now outdated term ‘grand mal’ for tonic-clonic seizures. Despite his work of great detail, his view was not accepted at the time and people continued believing epilepsy was of a spiritual, usually negative, nature.

 

Evil spirits were blamed in majority of the world until at least the 17th century.

 

In the 18th and early 19th centuries people with epilepsy were labelled as insane and locked in asylums with incredibly poor treatment. Around 1825 Jean-Martin Charcot found people with epilepsy side by side with the criminally insane in Pitié-Salpêtrière University Hospital, the birthplace of modern neurology. Until the late 1800’s, people with epilepsy were often incarcerated as ‘criminally insane’ despite some stigma easing in Europe and North America due to beliefs shifting from psychiatry to neurology.

 

In 1956, 18 US states provided for the sterilisation of people with epilepsy on eugenic grounds.

 

Organisations like Epilepsy Queensland Inc. were only founded in 1969. The Kemp family were inspired to found EQI due to their son with epilepsy being fired repeatedly on discriminatory grounds. This discrimination was commonplace with no anti-discrimination laws in place.

 

Until the 1970’s it was still legal in the United States to deny people with epilepsy entry to public places such as restaurants, theatres, recreational centres, etc.

 

In the United Kingdom, a law prohibiting people with epilepsy from marrying at all was repealed in 1970.

Before 1971 in the UK, epilepsy was grounds for marriage annulment despite the common vow “in sickness and in health”. To this day in India and China, epilepsy can justify denial of marriage and it primarily targets women in a further act of discrimination.

People with epilepsy in the United States were forbidden to marry in 17 states until 1980.

 

In a 1987 ruling, the United States Supreme Court ruled that “a review of the history of epilepsy provides a salient example that fear, rather than the handicap itself, is the major impetus for discrimination against the people with handicaps.”

 

As late as the second half of the 20th century, in Tanzania and parts of Africa, epilepsy was associated with possession by evil spirits, witchcraft, or poisoning and was believed to be contagious.

 

Today stigma can interfere with timely access to healthcare, early diagnosis, which is extremely important, and treatment.

The negative perceptions of epilepsy among medical professionals and structural discrimination resulting from stigma can impair the service utilization, particularly when there is scarcity of resources for treatment, rehabilitation and research.

In south India, for instance, parents of children with epilepsy tended to isolate themselves from others in their social network.

Around the world a young child with epilepsy may be refused continued access to education because social attitudes in educational institutions are prejudicial and discriminatory. I personally was denied access to continued education during my time in hospital and home care while in high school.

 

While some countries have laws in place where people with epilepsy can obtain a licence after a certain period, typically a year, of being seizure free, people of India simply can’t get a licence.

 

Insurance cover to people with epilepsy in India are issued at disadvantageous rate and are denied benefits in the event of accidents and/or death occurring due to epilepsy.

 

People with epilepsy find it harder to find a stable job as uneducated employers will often find a way around anti-discrimination laws that may be in place, some countries don’t even have these laws, to not employ the potential worker who is fully qualified for the job. If they find a job they may be refused advancement in their role or be treated differently by their employer and peers for having epilepsy.

 

Another obstacle faced worldwide, especially in rural areas, is lack of access to comprehensive epilepsy centres. In 2017 somebody presenting to a rural area hospital was left by doctors and nurses to experience seizures a publicly accessible space outside of the hospital because they believed she was faking for attention when, in reality, they were not accurately educated.

In this same rural area I was personally told that I shouldn’t be an activist because people with epilepsy live perfectly fine lives, so there was no need for what I do.

 

Todays media is just as harmful as the real world.

 

While Grey’s Anatomy is a progressive show that educates as its team learns, in 2005 the show used terms like “fish out of water” to describe somebody having a seizure. This is harmful and hurtful language that is dangerous to use in major mainstream media in modern times.

 

Even more recently a study of Twitter with authors from Dalhousie University in Canada found that of 10,662 tweets containing the word “seizure” collected during a single week in April of 2011, 41% were considered to be derogatory in nature.

 

People still video people having seizures unpermitted to mock the people being recorded. People with epilepsy are constantly the butt of generic, offensive, overly used jokes that have stuck around years upon years.

 

In 2019 after actor, dancer and philanthropist Cameron Boyce died, people acknowledged his death by posting videos of them poorly imitating seizures as the #CameronBoyceChallenge.

 

In 2020 the #SeizureChallenge rose to fame in mainstream media when people used social media platform TikTok to post videos of themselves faking seizures. In the background of the majority of these videos was a song from musician Juice Wrld who died after a seizure that was brought on from drug use. His death made headlines worldwide and this was people’s way of acknowledging that during their already offensive ‘challenge’.

 

Negative stereotypes of people with epilepsy have been so ingrained into society that many with epilepsy accept them. We also sit by silently when things like these TikTok videos arise. I hope by speaking about our own experiences and taking ownership and pride of our history we can change these habits and feel empowered to make change, even if the only change we make is amongst our friends and family.