Stories of People Living with Epilepsy

For those of you who have not read this we are reposting this moving speech.
We, at EAWA received this email a few days ago. With the permission of John Fielding we have reproduced the details here for you to read. 

"My name is John Fielding and I am writing this e-mail to advise you that I will be forwarding a cheque for the sum of $625.00 to your organisation. This donation is from the Perth-Bayswater Rugby Union Football Club Inc. 

My 18 year old daughter Rachel Fielding passed away on the 31st of May this year. She had struggled with Refractory Epilepsy for 5 years which did not respond to medications. Following a seizure she fell in such a way as to block her airway whilst she was unconscious and it unfortunately took her life. As you can imagine there was a huge reaction from her family and friends to our loss and their support has been amazing. Some of Rachel’s friends have subsequently involved themselves in a number of activities to increase awareness of her condition and to raise funds for various Epilepsy organisations. 

Rachel had only recently joined a Rugby Team and the news of her passing came as a sudden shock to the whole team. At the recent windup presentation they requested that I present a memorial trophy in memory of Rachel. For your information I have attached a copy of my speech I gave which may give you a little insight into Rachel’s life. At the windup I was presented with a cheque that the girls in Rachel’s team had been instrumental in raising and they requested that I forward it on to your organisation so you may be able to assist others with this unfortunate condition.
Hi, my name is John Fielding and I have been invited here today to present a trophy in memory of my daughter Rachel Fielding. As Rachel was a new member to the club this year and she only played a few games, I am assuming, excluding the ladies team, that most of you do not even know who Rachel is.

So before I make the presentation I think it fitting that I just share with you a bit about Rachel’s life.

And who better to do that than Rachel herself. I will now read an extract written by Rachel when she was writing to someone about her condition.

My name is Rachel Fielding and I have refractory Epilepsy. I had my first seizure when I was 14 and I am now in my second year of Uni about to turn 19. (In that 4 and half year period Rachel had about 100 full on seizures)I would really like it if the people around me knew more about what I was going through rather than appearing scared of me once they find out. I think there is a stigma about epilepsy but that is only because so little is known about it. 

• “I am one of the 50 million people around the world that have Epilepsy. 
• The two types I have are tonic-clonic (the ones you shake a lot and go unconscious) and absence (When you just phase out for a while), but there are actually around 40 different types of seizures. 
• It feels like I have been on at least 20 different medications and then mixes of medication and the side effects really suck. Some make me tired, some depressed, some really hungry and most don’t even work. I even got Kidney Stones from one of them which were very painful
• Only 70% of people get seizure control with medication and the other 30% of us just have to be really careful. 
• Obviously it’s not safe to have seizures I have hurt myself many times. My tongue has been a major casualty as it gets in the way of my teeth. Loads of scabbed knees and elbows, numerous black eyes, a broken nose, chipped teeth and some really bad burns. 
• I am still learning to live with my seizures but I have not yet mastered it. Turning 18 has added problems to do with trying to be an adult and be independent and go out. It is so hard to live with seizures as there is ALWAYS a part of my life that I am not in control of. I've had to accept that there are some things that I can't do because it’s too dangerous for me and other people, but at the same time I have to make sure I'm not using the epilepsy as an excuse, to not live my life! I just wish that more people understood how complex this is. 

Shortly after writing this Rachel came home one day very excited and announced that she had been talking to a friend at Uni, and she had decided she was going to play Rugby, and training was tonight could I give her a lift. (All in one breath) She had obviously decided that Rubgy was one of those things that was not too dangerous) 

At first I was anti the idea as not only did Rachel have Epilepsy but she had only recently gone through double knee surgery to stop her knees from dislocating. But I could see the excitement in her eyes. She battered her eyelids to suck me in and before I knew it I was driving down Beaufort street taking her to training.

After that Rugby was all she would talk about. She skipped lectures at uni so she could go to training and timetabled her study time so it did not clash. She started taking her lunch to Uni so she could use the Rugby Lunch box she had been given. Rugby had ignited a passion in her that I had not seen for a long time. 

Her first game arrived and there was much excitement in the house. We had to go out and buy new boots and she took great pride in pulling on the uniform for the first time. Rachel said she did not want my wife and I to come and watch until at least she knew some of the rules. We gave her, her space as we realised she was doing something off her own back and we wanted her to find her own way.

However instead of her 1st game being one to remember for all the right reasons unfortunately Rachel had a seizure after the game. She fell from a 1 meter lime stone wall straight on to her face and as a result lost two of her front teeth and smashed up her face quite badly. 

On the way out to the Fremantle hospital that night I said to my wife well that might be the end of her Rugby career. After just one game. How wrong I was. A few days later with a head bandaged like a mummy and missing teeth she was determined to go to training and not let her epilepsy dictate her life. I told her that she will scare the living daylights out of her coach and team mates showing up like that but she was determined to go. So once again I found myself driving down Beaufort Street taking her to training. We finally convinced her that she would have to miss at least one game before she returned and she reluctantly agreed.

It wasn’t until after her come back game when I realised how much this sport of Rugby had taken her in. Rachel still did not want us to come and watch. So when I picked her up after the game I asked her how the game went. There was silence for a moment and then she just started crying. After some cajoling she explained to me that they had a full team that week and the coach didn’t put her on not even for 5 minutes. She knew the coach was probably just trying to protect her but she didn’t want sympathy she just wanted to fit in and be part of the team, not some freak sitting on the side line.

Once again I thought well that may be the last straw and this will surely be the end of her Rugby Career. But she was not to be deterred, she showed up for training the next week as if nothing had happened determined to work her way back into the side. 

I don’t know what she said to the coach but the next week after the purchase of a helmet she was back playing. 

For Rachel the challenge was not to be the best player in the team or to make that unbelievable Tri. For Rachel the struggle was to just make the team, to be part of something where she felt she belonged. I truly believe she found that place right here with this club and for that I thank you all. 

I am very honoured to be able to present this trophy tonight in Rachel’s memory. The intent of the trophy is not for the best player, not for the player that scores the most tri’s but for the player that has the courage to keep up the spirit even when the road ahead looks all up hill. While Rachel only played a handful of games for the Club I hope she will be remembered as the person who never stopped climbing that hill, remembered for all the road blocks she had to jump over, remembered for all the sacrifices she had to make just to take the field and finally remembered for the perseverance she showed just to play the game she had come to love.

It is these qualities that the recipient of this trophy has shown this season and it is with great pleasure that I am able to award this trophy 

EAWA Note: Please feel free to share this on your Facebook status

Alissa Bowbanks - Epilepsy at 24Alissa Bowbanks with Mark Stewart

When I was a child I would occasionally see my mother write epilepsy under health information for school enrolments and so forth. I remember questioning this at one point, probably when I was about 11 years of age. She informed me that when I was six months old the doctors had found a scar on my brain after my mother noticed I was having the shakes in one of my arms.

The doctors at the time really couldn't tell her much, just saying that there was a possibility that I might develop epilepsy as I got a bit older.

22 years passed with nothing. It was rarely discussed or even considered, until October 2008 when I woke up in the morning and went through to the bathroom to have a shower and get ready for work. The next thing I remember is waking up in bed with a towel wrapped around my head as I normally would do to dry my hair.

I remember feeling drowsy and having a headache, so when I pulled the towel away from my hair I was surprised to find blood all over the towel and dried up in my hair. The shower curtain and rail were on the floor covered in blood, and there were drops of blood in our loungeroom also.

The doctors told me I fainted, and there was nothing to worry about. They gave me a pregnancy test which came back negative, and as I had two children already I was doubtful that pregnancy was the cause. Yet, two weeks later I found out I was in fact pregnant.

I had a hassle free pregnancy although I ended up having an emergency c-section which was a shock after two natural deliveries. Four weeks after having my daughter, I was picking my sons up from their child care centre. I got into the driver's seat and picked up my car keys. That is the last thing I remember. Apparently one of the other mothers found me, and a staff member called an ambulance.

I was semi conscious. I presume as I was reacting to my children's cries. This time, I was foaming at the mouth and breathing very shallowly. Again, the doctors told me I had fainted. I was recovering from a c-section, they said, and sent me home.

It wasn't until January 2010 that I finally got my diagnosis. While in the middle of a job interview, the room spinning began spinning. The next thing I remembered was waking up to two ambulance officers standing in front of me. Fortunately for me, I had witnesses this time and both of them confirmed I was fitting. As you can probably imagine, I didn't get the job.

 I was diagnosed with epilepsy and started on medication February 2010. I have had another three seizures since my diagnosis, one in March, June and July  2010. I am now on Epilem and Keppra, and it seems to be working. I have been seizure-free for over a year. 

The doctor's are still puzzled as to why I went so long with no seizures before epilepsy suddenly reared its head up, but I am just glad that I can make informed decisions and inform those around me. Epilepsy is very misunderstood and a lot of people are scared of the idea of it.

I share my story because hearing the stories of other epileptics and how they have dealt with it has been such an encouragement to me.

 

Water polo champ Luke Quinlivan talks about epilepsy brush with death

GOOD MATES: Australian water polo player, Luke Quinlivan, (centre) who sank to the bottom of the Challenge Stadium pool when he had an epilepsy seizure, with mates Luke O'Halloran and Mitchal Ainsworth, who came to his aid. Picture: Theo Fakos Source: PerthNow

AS water polo champion Luke Quinlivan sank to the bottom of the Challenge Stadium diving pool last November, his teammates watched in amusement, thinking he was mucking around.

His buddies at the early morning training session had no reason to think anything was wrong with the fighting-fit 25-year-old goalkeeper for the national men's team.

But Quinlivan was in the stranglehold of an epileptic seizure, unconscious and seconds away from drowning.

It wasn't until his cousin Nick O'Halloran and best mate Mitchal Ainsworth saw him at the bottom of the 5m pool in a strange "stretching" pose that alarm set in.

The pair quickly swam down to Quinlivan, who had been under water for about 60 seconds, and heaved their 100kg teammate out of the pool.

Quinlivan, the estranged son of former Olympic swimming champion Neil Brooks, described the experience as "scary".

"When I woke up there were people looking over me and a pool attendant pushing an oxygen mask on to my face and people pushing me to sit down," Quinlivan said.
"I didn't know where I was or what was going on, so my natural reaction was to try to fight people off. It felt like I was being attacked."

He was taken to hospital for observation and made a full recovery.

Quinlivan blames the seizure on missing his usual morning dose of medication for epilepsy.

Now he wants to raise awareness and dispel some of the myths and stigma surrounding the condition.

Quinlivan was diagnosed with epilepsy in 2001 at the age of 15.

"I know on a conscious level that I have epilepsy and asthma and no hearing in my left ear, and that I'm short-sighted, but on a subconscious level I don't accept that I have (any problems) and I just get on with it," Quinlivan said.
"That's a good thing in the sense that I've never been afraid . . . but it's also been my downfall because there are moments when I have been lax and forgotten to take my medication.
"This last seizure (in November last year) was a harsh reminder that I can't be complacent."

After a successful elbow operation this week, Quinlivan is hoping to get back into serious training soon for next year's London Olympics Games.

He hopes his story will encourage others with epilepsy to always take appropriate medication and also show people with a treatable form of the condition that they don't have to give up their dreams.

Epilepsy Association of WA executive officer Suresh Rajan said many people who had epilepsy, or who had children with the condition, were embarrassed to speak about it, even to family and friends.

Yet epilepsy was more common than most people thought, with at least 20,000 people affected by the condition in WA.

Mr Rajan encouraged employers to have staff trained to help a person having a seizure.

Quinlivan is calling on people to take part in Purple Day on March 26 by buying a purple ribbon or donating to EAWA. For more information go to epilepsywa.org.au.

ALL YOU NEED TO KNOW ABOUT EPILEPSY

Epilepsy is a disorder of brain function that results in recurring seizures.

One in 20 children will have a seizure during childhood and adolescence.

Epilepsy is increasingly common after the age of 50 years.

There are at least 20,000 people with active epilepsy in WA

A further 1,400 new patients present with a seizure each year.

Some seizures are hardly noticeable and other types render the person unconscious.


HOW TO TREAT A PERSON HAVING A SEIZURE:

Remain with the person and stay calm

Note the length of seizure

Protect them from injury by removing hard objects from surrounding area

Gently roll person on side after the seizure

Communicate with them to confirm they have regained consciousness

Reassure the person

Keep onlookers away

DO NOT:

Restrain the person's movements

Force anything into their mouth

Give them water, pills or food until they are fully alert

RING AN AMBULANCE IF:

Seizure lasts more than 5 minutes

Person is not conscious after 5 minutes

Seizure occurs in water

Person is injured

Person is pregnant or has diabetes

It is their first seizure

You are in doubt

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