Month: August 2014

Epilepsy Awareness Day at Disneyland 2014

Check it out! The EAS is a partner for this event: http://www.epilepsyawarenessday.org/partners.html

On November 6, 2014 people of ages with Epilepsy along with their family and friends will spend the day at Disneyland Park in Anaheim, California. The Epilepsy Awareness Squad will be there both on the November 6th and on November 5th at the EXPO.

The EXPO will feature several non-profit, Epilepsy support groups, hospitals with Epilepsy programs, Vendors who service the Epilepsy community, and a schedule of guest speakers including physicians and company representatives.

The EXPO will take place at the Fairfield Inn by Marriott, located directly across the street from Disneyland resort. Hours will be November 5, 2014 from 10am – 7pm.

Hope to see some of you there!

My Journey – Part 2

This is the second segment of Chalyce’s story. You can read Part 1 here.

by Chalyce Sherman

After the MRI I had and we found out life changed forever. My mom learned everything about seizures and took me to my appointments. She was my rock. Same with my Grandmama. My mom was my rock for my safety and my Grandmama was my rock for my emotional side. I’m glad I had both. Without both of them, life would be different.
My mom took care of telling people. She gathered my teachers together and showed them the doctor note that stated I have epilepsy. She wanted to give them a safety plan. Which was very smart. My mom did tell me that one teacher didn’t actually believe that I had epilepsy even with the note FROM THE DOCTOR! If the teacher is reading this right now…..still have them and still not faking.
When I went to school it was horrible. Kids didn’t understand so they teased me. I don’t even know if some knew why they were teasing me. It didn’t help when I did have a grand mal, right in the middle of class. Not fun! All I remember is that we were supposed to do research on an animal. I chose the dolphin. And ended up doing research on River Dolphins. The class and I were in the the computer lab doing research and I got up to grab an encyclopedia and the next thing I knew, everyone was out of the room except the teachers. I woke up crying and the only thing I remember thinking was “OMG! I just peed my pants! Not just my pants. I peed my pants and on my friends sweater. OMG! And everyone saw me.” Then I just wanted to sleep.
My mom must have got there quick because she had everything under control. She even made sure no one called 911. She got me up into a wheelchair and made sure I was able to understand what was going on. I remember leaving school that day telling my best friend “I promise I will wash your sweater and get it back to you. I’m so sorry. I’m super sorry.” I don’t think I ever did give her that sweater back but she had told me that was fine.
After that, kids got horrible. I was just the seizure girl. I already had other issues I was trying to work out, but having something people could see was not fun. Kids made jokes about me wearing diapers because I would randomly pee my pants because of the seizures. I would be looked at weird because I wasn’t allowed to do gym, which I loved. Some kids thought I made it up so I would get special treatment.
I remember one time at school I had a complex partial and for most of lunch it was normal. I was talking to my friends enjoying my pizza. I had a fork and knife (I wanted to be fancy lol) –  of course both plastic. I remember talking to my friends and the next thing I knew, my friends were saying my name over and over again and also snapping their fingers at me. It was kind of annoying especially since I had no clue what just happened. Apparently I had a complex partial (duhhh) and threw the fork I was using (jerked it actually) at the table behind us….which happened to be the “popular” table.
They told them sorry and got me a new fork. They made it seem like the only thing that happened is that I just was ignoring them. It was crazy, but I’m glad they dealt with it amazingly.
At home, it wasn’t easy either. My mom was helping try to manage it and figure out how to make me better, but on the other side I had my step dad teasing me. When I was having problems figuring out the right dose with some meds he would tease me. And it wasn’t just one time, it was all the time.
I remember I was losing my hair in clumps and super afraid I might lose it all. Instead of comforting me, he told me that when I had one strand of hair left, we could figure out which way the wind was blowing. It hurt my feelings so much. I was only 12 or 13. I felt like he didn’t care at all.
He even called me seizure girl once. Told me it was funny. I wasn’t ready for funny. It was new thing for me.
Actually, I felt like I was hated by my step dad because I was the black sheep in his white picket fence world. I had the seizures. I was costing HIM money. I wanted to be able to make the seizures go away for him for a long time. Not for me but for him so we would be a white picket fence family.
But after you take it too far, it doesn’t work. He used to tell me that I was dumb and that I wouldn’t be anything. I got punished by him because I “wasn’t listening.” Even though he knew I had seizures. If anything ever went wrong, it was my fault and I felt like it was because he just wanted me out of the family.
Well fast forward, my mom divorced him. I was so happy. I told him how much I hated him. Being teased by a guy you thought was your dad (yes, for a long time I believed he was my dad until my mom told me he wasn’t) is hard. Telling him how I really felt about him, made things amazing.
My mom finally got us out of there (my brother, her and myself), we moved to the next town over. She told the school about my seizures and had me all good. The first time at my new school that I had a seizure, I knew it was back to the way the old school was. I had a grand mal during chorus. Basically the same thing happened. I cried and freaked out a bit. I remember talking to people and then BAM! No kids in the room, the teachers are all around me, and my mom is there. I was crying and felt horrible I peed again. This time I didn’t have a friends sweater I was wearing.
I did not want to go to school ever again there because I knew what was going to happen. The kids would point, laugh, and say mean things when I got there. Well, my mom made me go back. So I went in hoping no one would say anything. They didn’t. They didn’t say one mean thing at all!
Well, I heard mean things were said but I don’t know if that is true. What I know is true is I felt so……HAPPY, to be at the new school. The kids from all groups had a rose for me. All day I had received roses. I just wanted to cry. (I was half way through 8th grade at that time). I’m pretty sure at one point I did cry. The end of the day the guidance counsellor of the school gave me a vase. The kids actually told me they were scared for me and they were happy I was okay.
I got home and told my mom. I was so happy to be apart of a school who didn’t see me as “Seizure girl” but as Chalyce the new girl. I was okay with just new girl. Then high school hit.
Again I have to pause my story here. This time its a different reason though. I’m in the hospital at the moment. They are trying to induce seizures to help me out. I’m having a Video EEG done. 4-5 days at a hospital…my doctor said it may end up being more days. It’s just getting late. Another My Journey to come. Please stay tuned.
If you would like to see what a video EEG involves, Caitie had one last year and made a video of it. You can view that here.

Back to Work and Return to Unemployment

by Chris Ovenden

Having epilepsy has meant that I have been in and out of jobs, for a number of reasons.  The first being health and safety, which is fair. After all, you can’t work long shifts in a warehouse where you can go hours without seeing someone. My employers tried moving me into an office, but moved me back when the two people employed to replace me in the warehouse couldn’t keep up with the work.  So I was in the office and the warehouse and eventually put back in the warehouse full time. Eventually,this after another seizure, Human Resources discovered this and were forced to let me go on health and safety grounds.  This also meant they could employ more warehouse staff.

Other jobs I have lost were due to companies adding more and more work onto my schedule until I cracked and forgot something or was late with something.  Over 17 years I have had 18 jobs including the one I am in at the moment.

The section in my life I would like to concentrate on is after being let go from one of the largest advertising/media groups in the world, where epilepsy was seen as a hindrance. I was unemployed for 2 weeks.

Some background information for those outside the UK: in the UK when you first become unemployed you go to the job centre and get put on Jobseekers allowance, this involves going to the job centre every 2 weeks proving you have searched for work and getting paid not enough to cover basic human needs.  After months of that you are allowed to progress to unemployment benefits, which just cover human needs unless you claim extras.  In the UK epilepsy is considered a disability and you can get disability living allowance if you work or not.

So the moment I was escorted out of the media companies building I was on the phone to my local job centre to arrange an interview and get the process sorted.  I believe I got an interview in just a few days. It’s a no suit and tie affair; just turn up in jeans and a hoodie.  They gave me the details of what to bring, like my CV and sent me a confirming email.

By the time I get home on the train I had already applied for jobs and I was ready to go.  I took my suit to the cleaners and updated my CV again.  I spent every minute of every day until the interview searching for work and applying for positions.  Once I got the the interview with the job centre and I filled in the forms, I got told that I would receive no money for 2 weeks.

I should point out its just before Christmas, too.  Fortunately I had money available and I had no gifts to buy.  I was given a little slip of paper giving me my dates to sign in.  The next date was Christmas Eve 2010 at 12:30.  Most years I take Christmas eve off. I stay at my parents over Christmas and it takes a day to get there.  But that year I grinned and bore it.  The assistant (whom I felt sorry for, as they must get so much abuse) asked about my epilepsy. She arranged a meeting after my next sign in date so I could get more money as part of the disability living allowance.  I grinned and told her that I intended to have a job before Christmas.  I said it loud enough that the “Scum” she normally deals with might be inspired to get a job.  All I heard was laughing.

I left the centre ready to get a job. I hate going the job centre but it does help some people. Most people abuse the system it was created to help.  I sent my CV out, I filled in applications.  I completed three interviews before Christmas Eve and on the 23rd of December I got a call from an employment agent. He saw my CV and thought I would be perfect for a role he was recruiting for.  The only problem was that the interview for the job was the next day at 2pm and I had to meet him first.  I pointed out that it was impossible.  The distance to meet the agent was too far.  But I suggested a Skype interview.  So I Skyped him to do the interview from my flat. I emailed him the completed forms and agreed to the interview with the company.

It was a 3 month contract with the possibility of being extended.  No one knew how long it could be extended for but three months of being paid good money was certainly better than nothing.  I rang the Job Centre to explain the situation about the job interview and they agreed that I could do my sign in at 9:30 as they have a slot free. I arranged for my parents to pick my stuff up that night so I can go straight from my interview to their home.  Things were looking good.

Christmas Eve rolled around. I had my suit ready, my shoes shined and I was ready.  I got dressed and off I went to the job centre.  I walked in smart as anything. I sat down for my meeting with them,  still having to do both.  I proved that I have been searching for work, even joked about moving it forward for the interview and said if I got it I was right about before Christmas.

After both meetings I knew that the times were against me.  I jumped on my train and made it to the job interview with 15 minutes to spare.  The interview was with a little contract Finance Director who was covering while the main FD was on maternity leave. We talked about the role and the company.  Where it was going, what I could do.  The usual interview things.  I was made aware that there were five people for the job and I was the last to be interviewed.  Second interviews would be in the New Year, if I was selected.  I smiled but kept my British stiff upper lip, as I knew that 2 weeks were going to be up and I may have failed (again).

I left a little bit on a downer. Everyone on the trains were in party moods for Christmas and I was unemployed, single, and someone who hates Christmas.  As I made my way to my parents’ home, I knew I would see my little brother so things were getting better. And my laptop was at my parents’ house so I could job search once there.  I reminded myself that things were not so bad.

Until recently the underground and train network in the UK were terrible for Mobile/Cell phones. Maybe it was just that I got off the last train but my phone rang from the agent with news. I was braced for the worst, however I was told no second interview would be needed. I got the job! Could I start on the 2nd January. My two week prediction was spot on!

The job was working in the accounts department, which is what I have done almost exclusively since I was 19. It was meant to be payables and receivables, which is what I started doing; however, the sales team in their non-wisdom on anything thought that sales administration should be done by the finance team because it had the numbers.  When I pointed out that they were sales numbers they were a little confused.  Mostly because I don’t think they expected the contract employee, who should be impressing everyone, to actually stand up to them. But also as it was a company where everyone had a degree.  I think even the cleaner had a degree.  I was the only one that didn’t and still doesn’t.

After a week of arguing between the sales director, the finance director, managing director and head office, they agreed that the work should be taken on by finance (me).  When I saw the spreadsheet, I stormed into the sales director’s office and asked about changing it.  I suggested making it give the same detail but refining the process and speeding up the task.  At this point I realised that the sales director was the sales director not because he earn’t the position but because he went the right school then college and eventually university.  In England you don’t have to be smart to attend the right places, you just have to have money.  Also his degree was a “Mickey Mouse” degree.  However his colleague pointed out that if the information was exactly the same at the end, and it speeded everything up, then they would happy for me to change it.  I spent 3 days refining the process and the spreadsheet.  What they wanted done before that took 2 hours I was now getting done in 15 minutes with my new process.

I was given an upgrade in title to Sales Analyst, rather than Accounts Assistant. I still did the accounts work but was passed the sales jobs, too.  Every time I was given a spreadsheet that a barely evolved ape put together, I would refine it.  This made the process go from 2 or 3 hours to 15 to 30 minutes.  I had my contract extended to 6 months.

The only problems with the company were that no one liked the FD (not even me, and he hired me), and there was a huge drinking and drug culture.  Lunchtime drinking was the norm, after work drinking was the norm.  At payday we would all be in the bar and a few would head to the toilets to have a conversation with their dealer.  I had said I would get out of the drinking culture when I left the media company the previous month but I was right back in it.  I only drank on the Friday in the evening but I knew it was a company I had to get out from when one Friday I was having my one pint of Guinness and before I knew it there were three shots lined up and another fout pints and people telling me that I was falling behind. I stopped drinking as much from then on.

I was four months into my six months and thought I should look for something else. Better to have the right job than any job, I reasoned.  I searched for contracts that would come up to start straight away. With only four weeks left of the contract I got an interview. It was for a theatre company, near where I worked before. It was a full time, basic accounts position with no extras. I completed the interview and a second and was offered the job. I handed in my notice at the contract role and was told that they were going to make me permanent.  I had reorganised the sales processes, I had redone the budgets for the next financial year and I was on top with the accounts work.  I was making work for myself rather than sitting around waiting on it.  But they accepted my resignation grudgingly (they even offered me more money).

My new job at the theatre company was meant to be the one that defined me as a person. It was meant to be the start of everything. Hopefully I was going to be there a long time.

I was honest about everything. I told them about my Epilepsy in the interviews. The finance controller actually told me that they employed people with disabilities and were an equal opportunity employer. In fact they already had someone with a disability in the accounts department. All they would need to know would be what to do in case of a seizure and for me to be honest about what was going on. I started my job. The person I was replacing had one week to train me, which was not enough. They should have hired a temp weeks before. However I learnt as quickly as possible and the old guy was gone. I was then sent emails asking me to do things and I would email back telling them I had no idea how. My first month was stressful but I got through it. The logic behind things was crazy, often you needed to do things five or six times, when there were easier more streamlined ways.  However I wanted to keep the job. I was there for the long haul so did things the crazy way rather than the streamlined and simplistic way.

In the second month they had to send out the quarterly figures to the board. I was given four A3 sheets, and three A4 sheets of paper (I remember the sizes and quantities) and was told to enter the information onto the master spreadsheet manually. All the information was taken from lesser spreadsheets. I did it the FC’s way. I also linked the smaller sheets to a copy of the master. I showed the FC, and pointed out that four hours manually typing work really was a waste of time. Linking work and updating the link takes minutes and gives the same answer. I was told that it was a waste of my time creating new spreadsheets, etc. I don’t think she  understood that eventually there would be no second copies, just the master and the smaller sheets, with the links.  But back to normal it went with the multiple ways of doing one thing.

As you are reading this you must be thinking, does this guy have Epilepsy? This story is all about work. The truth is I actually started the story intentionally just after a seizure. I was a couple of days short of six months seizure free. I had been drinking. I was enjoying myself and I was happy. However one morning I got up and didn’t feel great. But am a believer that eventually the day gets better and I will able to work. I had a seizure and needed a day from work. I lost a false tooth again, I let work know and was back within days.

I found out the pre-mentioned disabled person at the theatre company had diabetes. The FC was not very understanding with respect to my Epilepsy.

At the same time the company decided that they would reduce the size of the department.  They let the management accountant go and his work was passed around the department. A lot of it was deemed appropriate for me to do.

The seizures slowly increased over time in the next few months.  But I made every effort to help the department. I bought a book about Epilepsy and made notes for them to read. I don’t think they ever looked at it.

At the beginning of August 2011 my partial seizures were getting bad and I was semi passed out outside on the way to work.  I would pay for a guy to make sure I got off the train at the correct stop. Once my boss agreed to let me go home as I was halfway to work.  It turned out to be a waste of money as the guy got off the train while I was unconscious.  Luckily I did get off the train at the right place. I was picked up by my folks and delivered home to sleep it off.

Later in August I celebrated my 30th birthday (which was three years ago on the 28th August). That year it fell on the summer bank holiday weekend. I made a big deal out of buying cakes and things for people to celebrate. I had been consciously drinking nothing as the seizures were now out of control.

Just over a week later (6th September 2011) the following happened:

Like before I woke up feeling rough but made an effort to go to work. I knew I had a pair of black trousers, a white shirt and a black hoodie on that day. I got my train into London and from there I had a 30 minute walk to the office.  I always saw it as exercise and a way of clearing my head before having to deal with work.  Barely two minutes into the walk, outside Bank Station on Poultry Street (near the Bank of England) I had a seizure. The pavement is always congested with people coming out of the station to get to offices, going into the station and waiting for buses. So its common that you have to walk by the edge of the pavement or in the road for a bit.  I can’t say if I was in the road or on the edge of the pavement.  All I know is what I was later told by the paramedics: that I was pulled from under a bus in the road! Below is a picture of me post paramedic clean up in the ambulance.

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This is just the face, as my white shirt was covered in blood. I was in and out of consciousness but managed to text my FC to say I wouldn’t be in. Once I got to the hospital I was cleaned up a little more as per the next picture.

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The pictures were sent to my boss to prove the point that I wasn’t able to work.

From the time capture on the pictures the first was taken well after I should have been in work. So I don’t know how long I was in and out of consciousness until I could take it.  The second was an hour later.  My eyes blackened, I lost my fake tooth again, my tongue was bit to pieces, and my lips would split open every time that opened my mouth over the coming hours.  After my boss saw the pictures I was told not to come in until the next week.

The next week I returned to normal, still battered and bruised. I was whisked into a meeting the moment I arrived.  The meeting contained my finance director, finance controller, and me. At that meeting I lost my job.

The good news is, like when I lost the Media Company job, I did the same thing. I went straight to work looking for a new job and  I was employed within 2 or 3 weeks after losing this one.

My Journey – Part One

Hi. I’m Chalyce Joachim. I am 23 years old and happily married.I have a great job as a sales/marketing assistant at 2impress (we do branded apparel and promo products) oh, and retail clerk. Hopefully not for long though. Soon I’m on my way up to just marketing. On the outside I am completely normal…….kinda. I do like to state my individuality a bit by wearing funky clothes. lol. But on the inside I am not normal.

I have JME (Juvenile Myoclonic Epilepsy). My 3 seizures that go with that are absent, complex partial, and grand mal/tonic clonic. I was diagnosed when I was in 6th grade. I had been having them since I was young. Like, I’m guessing, 2 years old. I’m not sure why I have mine. I don’t know if its because my parents at the time were young and thinking putting a blanket on a 2 year old while she was sick was a good idea or if its genetics. Either way GRRRR! Sorry needed to get that out.
When I was in 4th grade my Grandmama told me that she knew something was off. My mom told me that teachers kept saying I would go into other classrooms and sit down like I belonged there. I would roam the halls. I wouldn’t listen. I was a wonderful kid though. I was happy and always willing to help.
Now the way I remember elementary wasn’t quite like that. I remember helping teachers put lunch trays away after lunch because that’s just what I did. I remember having 2 boy best friends who had crushes on me. I remember everyone getting along in school and that life was pretty good.
I ended up apparently seeing a primary doctor though (my mom told me this part)  and everything was great. Just fantastic. So we didn’t think twice about it.
Flash ahead to 6th grade and why I needed to get checked out. I wasn’t listening still, (according to, well, everyone), I was failing almost all my classes, and, I don’t know the other reasons, but it was pretty much 4th grade all over again.
See what I saw 6th grade like was like it was H377! (Trying to not swear) I thought there was no homework EVER! (yeah I know H. E. double hockey sticks with an eye roll but failing and having no homework ever was kinda weird). I was constantly teased for things I don’t remember doing. People were mean. Plus I got tired  A LOT! Like in the middle of class, I just wanted a nap. I know normal for anyone and everyone but I love to be awake and doing things….having a nap was just not in my mind.
Anyway, finally, and I don’t remember why, but I got taken to get looked at again by the doctors. I went to a hospital in Milwaukee, WI to get an MRI or CT scan done….I can’t remember which. Anyway, on the way to the hospital I do remember this. My mom didn’t know what to do or say. I know she didn’t want anything to be wrong with me, and sometimes moms don’t know what to say to help you feel better so I got, “There better be something wrong with you, or you’re grounded for 3 months!” I started praying right after that. I prayed for something to be wrong with me until I realized then I might have to deal with it for my whole life. So I prayed that there was nothing wrong with me and that I was just daydreaming and that I would remember my daydreams. Then I realized I’d be grounded for 3 months which was pretty much all summer so, yeah changed my mind. Which I did for pretty much the whole way there. I prayed my lose-lose prayer.
I had to lay (I think it was an MRI) still in this machine while a movie played so they could scan my brain to see what was wrong with me. Of course when you pray a lose-lose prayer you get a lost. They found out I was having seizures.
Now I realize this is not where someone should leave off with a story, but since my seizures have gotten to a weird point…like hard to control I can only tell you so much at once. Part 2 will be coming your way soon. Thank you for letting me get Part 1 out at least.
🙂 I WISH YOU PEACE LOVE HAPPINESS and A SEIZURE FREE LIFE 🙂
Sneak peek of Part 2: I was teased horribly when I found out I had epilepsy. Well, I was already being teased, but finding out I had these made it worse. And it wasn’t just people I went to school with who teased me. I had a stepdad (HAD is key word….parents got divorced. GO MOM!) who teased me when we found out.
Stay tuned for the second part of Chalyce’s story.

Michelle’s Story

My name is Michelle and I was diagnosed with epilepsy 11 years ago. My seizures didn’t start until adulthood. I have a lesion on my left frontal lobe which my doctor says is a birth defect. I don’t work, I don’t drive and my seizures are not controlled. Those are the basic details. I’ve shared detailed history of my journey with epilepsy on my blog (www.fitepileptic.com) but I don’t really share that much about it anymore, a recent decision. Not because I am embarrassed to say I have epilepsy and certainly not because I care what people think of me and my condition. I don’t share much because my focus is to rise above it and not dwell on it.

I made the decision to focus on rising above because during the first 8 years of life with epilepsy I handled it well and moved forward. I had accepted my condition and that was that. The last couple of years I have shared and I have talked with others about epilepsy. Sadly I found that for me all this talk brought on a negative side. Talking about epilepsy with others and blogging about it, I just ended up feeling down and annoyed. Talking about doctor’s appointments, frustrations, medications, feeling tired, seizures, etc. – I began two feel like I was becoming a “poor me” person. Talking and sharing doesn’t work for me. Please don’t misunderstand, I do realize that epilepsy is a serious condition but FOR ME, I’ve always felt that things could be worse. Those of us with epilepsy suffer in different ways. Each of us has to do what is best for us individually. I don’t think there is a right or wrong answer. Sharing/talking about epilepsy is a big downer for me.

I mentioned that I have blogged about epilepsy but I only did because I started a blog about weight loss. I brought epilepsy up because it’s a part of my life. Epilepsy and weight issues both equally affect me. I still blog but not often and when I do it’s mostly about weight loss. I just don’t feel like I have anything to share. My choice has been to show that I can rise above this condition. I don’t hide the fact that I have epilepsy and I feel that when I live an active and happy life, I’m showing I can rise above.

Nikey’s Story

Not all epilepsy stories have happy endings. We send our condolences to Nikey’s friends and family and hope her story raises awareness of SUDEP

by Caron Robinson (Nikey’s mum)

Nikey started her epilepsy life, quite out of the blue, aged 7. It was very quickly apparent that her seizures were quite out of control and refractory… Aged 8, she started to have memory problems, therefore her education started to suffer.

I fought for and got 2 hours support for Nik in primary school, to support her 1-1 during games/swimming lessons in school.
The gap in her education compared to her peers became greater. It was obvious that at senior school she was going to struggle. I fought for and won 32 hours per week 1-1 support plus 1-1 taxi transport door to door, ready for the senior transition.

Nikey’s epilepsy continued to affect her quality of life in all areas. Her seizures (both tonic clonic and complex partials) still plagued her daytimes and nighttimes. Leaving her physically shattered and often sick. Her days were often spent laying on the sofa in recovery or seizing more…

Nikey attended senior school for 18 months during which time, I had made contact with her neurologist and found that there was an epilepsy centre in East Anglia. My next fight was born. Involving social services, education authority and medical. And eventually my PMs support.

Her place was secured at the centre. Including taxi transfer. Nikey was part of this process decision. She happily wanted to fit in with peers and get away from the bullies in mainstream school.

Residential education started aged 13. During this time, Nikey was having in excess of 200 seizures per month. She spent a great deal of time having emergency medication administered. Knocking her into oblivion and the numerous side effects of heavy drugs and postictal  seizure.

During times of seizure free days, Nikey’s personality would try to show itself, staff realised that there was more to Nikey than she was able to show.

Nikey tried and tested 24 medication changes or combination meds, nothing worked. The surgery option was mentioned, only to find out that both sides of her brain were involved deeming surgery a non starter.

So continuing with meds was our only hope. I was not up for delving into the DVT as little was known about its long term problems, and the Ketogenic diet was too harsh to subject Nikey to anymore guinea-pig trials.

Aged 16 and 8 years later, trileptal was offered, not holding out much hope of an improvement, I said, “What harm can it do…but….”

Niks education improved so much that she was offered a place at the epilepsy college, and after in the 24/7 learning centre, life skills, which she continued every weekend and school holidays when she came home.

Within 2 weeks Nik’s seizures were reduced to 11 per month, just in time for our USA holiday, where Nik would be supported, filmed and fulfill an ambition of swimming with dolphins at the dolphin research centre, not just once, but 5 sessions. I had decided to make a memory book in the lead up to the swim, but Nik remembered it all..wow..the lights had been switched back on.
For the last 7 years of Nik’s life, Nik lived her life to the fullest, and without limits.

She moved into her own home, with mine and the PAs that she interviewed herself as her support. She went back to college to fill in the gaps she knew she had, she did volunteer work, she joined a jewellery making college course, she designed and hand painted bags, she rode the biggest roller-coasters, she reversed bungee jumped, she carpet rode a 306 feet drop over a lake…she joined the gym,she shopped, she cooked, she sang and enjoyed karaoke nights, she was meeting new people. She told me she was remembering things at college that she had learnt before. She inspired the college to hold a leavers prom, which they now hold every year. She was very inspiring, kind, thoughtful and spoke out about her epilepsy…to anyone who would listen..(at 11 she spoke about herself and epilepsy to her whole school year) she was brave.

On the 20/3/13 Nikey went to bed, telling me she was going to ask for more volunteering hours at the SUE RYDER shop, as she was learning new skills and being given the opportunity to do more. (Nik was very able). She bought me a lovely garden ornament and made me smile as she always let me know how much she had spent, even though it was in the sale. We went to bed (I slept at Nik’s as her night time support…) funding for her 24/7 support was another fight!

I found Nikey sleeping on the 21/3/13 at 8.10 am, when her alarm clock kept on going. Nikey was in sleeping position, and indeed I had even gone into her room opening curtains and talking to her. It was only then that I realised something was wrong as Nik always responded to me. This time she didn’t. Despite CPR, I could not bring her back. She had been using her anti-suffocation pillow and her seizure bed alarm. No alarm had been triggered and I had been hearing her seizures for 17 years.
Her cause of death…SUDEP (Sudden Unexpected Death in Epilepsy) … rare, little spoken about … though I knew the risks and put potential risk reduction in place, as was used at college.

Since Nik’s death, I have been working hard to raise awareness to SUDEP and support SUDEP Action Charity in Nik’s memory…

We have raised/donated £17000 since our loss. Nik is remembered and loved very much by me; her dad, Pete; her sisters, Ceri and Jaimi; her nieces, Keira and Paige; and her nephew, Dean. Her 2 brother in laws Michael and Phil, were considered as siblings. She leaves a huge Nikey shaped hole in our lives that no one will fill.

It is estimated that 1 in 1,000 people with epilepsy will die each year (although exact numbers are difficult to track). To learn more about SUDEP and preventative measures, please visit the following links:

SUDEP Aware

SUDEP Action

Danny Did Foundation

SUDEP: Epilepsy Foundation

Canadian Epilepsy Alliance: SUDEP