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August edition of Epilepsy TodayIn the August edition of Epilepsy Today

The science and the services - Epilepsy in the electric eighties

In the 1980s, our scientific understanding of epilepsy - and how to treat it - advanced immensely. But Peter Fox asks: did NHS services follow suit?

The 80s saw many drammatic advances in science and technology, while also giving rise to a vibrant period of popular culture. In 1981, the first personal computer was introduced by IBM and the first space shuttle was launched. The same year saw the marriage of Prince Charles and Lady Diana. 1982 saw the Falklands war. Eighties fashion and design used strong, bright colours and patterns that have recently returned to high street fashion.


The youth and the truth

PR and campaigns manager Aimee Gee and her team outline Epilepsy Action’s activities dur ing National Epilepsy Week – aimed at young people living with the condition.

National Epilepsy Week 2010 took place between 13 and 19 June – a little later than usual because of the general election! The theme this year was young people with epilepsy – which gave Epilepsy Action the opportunity to launch several new initiatives for their benefit.


Happy birthday Epilepsy Action! - move with the times

Epilepsy Action is celebrating its 60th birthday. Gemma Feltham explores how the charity has consistently delivered services – with cutting-edge technology

In recent years, technology has improved in leaps and bounds, while becoming more and more widespread. In the digital age, the idea of life before the internet or before mobile phones is virtually unthinkable.


A novel approach

William Fiennes is Epilepsy Action’s Honorary Vice President, and the award-winning author of The Music Room. William tells Peter Fox all about writing – and losing a brother to seizures.

And much more in the latest issue of Epilepsy Today...

Epilepsy Today is published six times a year. Epilepsy Today is available for just £3.50 from our online shop but the magazine is free to members.

If you're a member of Epilepsy Action, you can download the latest edition of Epilepsy Today, as well as back issues, from memberZONE, our online resource for Epilepsy Action members.

Professional members will also receive Epilepsy Professional and Seizure – the European Journal for Epilepsy

Comments

I am very happy to join your organisation at least to have some one to share my problems with because i always
been discrimnated and bullied so at least to have some one to open my heart .

I always enjoy reading the magazine and find the articles very interesting. One thing that I feel could be addressed is the experience of people with epilepsy who have to be admitted to hospital. I don't mean just following seizures but for operations etc. I have recently had a hip operation and was quite worried about the hospital stay. I mentioned this to the epilepsy nurse and she said she would write and ask them to see that I was accompanied when going to the bathroom and also that I have my medication at the right time. My husband also emphasised this when he came. The staff did not take much notice of this and in fact because the bathroom was used by male as well as female patients It was necessary to lock the door. The physiotherapists had the same attitude and were only concerned with seeing you were managing to do exercises and walk on your crutches. Also medication was not given until you were nearly asleep. It was kept in a drawer by the bed and this was locked.

I felt really ill while there and was glad to get home after seven days and I was found to be anaemic and suffering from angina following the operation. I am walking ok but have not fully recovered in that the angina is still be looked at. I did not expect special treatment but if I felt a bit "off" in the night I thought it might have been better to have helped me to the bathroom or given a commode. I think I was really fortunate not to have had a seizure while in the bathroom washing or using the toilet.

Diane

Have You Ever Had One Of Those Teachers?

I don’t hold many fond memories of my school days mostly because it was riddled with fits and every body bullied me because of it. Anyway there was one chapter in my life though when it wasn’t just the other children but also one particular teacher.

When I first saw this teacher in the school she was fine until one day I had a fit and she was there. After that every time I passed her in the corridor or the play ground she tried to put as much distance between us both. This continued for the first two years of primary and every time I saw her she looked at me as if I was a bigger freak then ever.

However when I got to the fourth year of primary school I was told that she was to be my teacher for the next year; GREAT!! I thought.

Right from day one she had it in for me. “I want you to sit here at the front of the class, I need to keep an eye on you we can’t have you wondering around disrupting other classes can we?” I hadn’t had a fit at that time for at least a year but anyway I just agreed with her.

The way she conducted her lessons meant that we sat boy then girl, boy then girl right around the class. She sat me next to what she thought was the brightest girl in the class at the front, she thought that she will be able to deal with anything. I didn’t have any fits all that year but that didn’t stop her hating me and she never let me forget who I was. When we used to go into the swimming pool she was more concerned about me getting changed than what she was when I was swimming. “Are you sure you can dress yourself?” she would say but when I went into the pool she would look the other way.

I was good at maths in school and when we used to have to do sums off the blackboard I always got them right, there was only me and this girl sat next to me who did. This led her to believe that I must be copying off her so she announced to the class “I have caught someone here copying so I am going to break my beliefs and sit him next to a boy.” She sat me next to the thickest boy in the class. However the next time she did her board work I still got them all right and the girl got about 3 wrong. This really narked her and she sent me to the headmaster for breaking wind. The Headmaster laughed and just said “Don’t do it again.”

This continued for the whole year and when I asked her if I could play the trumpet in her brass band she told me that I would disrupt everybody else. This was her pride and joy, at the end of every year she did a brass band performance in front of all the parents and even charged 20p per ticket to go to charity. Her performance was rapidly approaching and she told the class that she liked all of her pupils who where in her class at the time to help out doing something on the night. She looked at me and said “You can help pull the curtains back stage then you won’t disrupt anybody”. I never said anything.

The night arrived and I was backstage with 3 other Boys pulling the curtains. I was chewing on some bubble gum and had loads of it in my pockets and one of the other boys had some as well but his was a different type to mine. Boys been boys we challenged each other who could blow the biggest bubble so I filled my mouth with about ten pieces and was blowing bubbles bigger than my face.
It was the break and we had to shut the curtains whilst the next performance was ready and one of the boys said to me “I bet you daren’t go out there and blow one!”
So I thought whose concert it was and went straight onto the stage and in front of about 200 parents stood there and blew one of the biggest bubbles you have ever seen. The place roared with laughter I got the loudest cheer of the night and I remember everybody stood pointing at me. This made her turn around and look at me. I still PMS when I think of the look of horror on her face.

The next day when I went back to school she was in a rage with me.
“You God Damn Thing!!” “I hated you before; You have broken this whole schools reputation I knew I shouldn’t have allowed you to help out, you have destroyed everything how can I do this performance next year now you must go and apologise to the other two teachers who where there. I hope that they can find it in there heart to forgive you! it will cost charities money.”

I went to the first teacher she blasted off at me in the same way and she did manage to really upset me. When she had finished I left her room visibly shaken and went back to see her. She could see that I was very upset but said “I haven’t finished with you yet go apologise to the other teacher as well!!”

I set off my legs where shaking and I got to her door trying not to cry. She saw me and said “What is the matter?” I told her why I had come she said
“You are a Hero!! Those bloody stupid concerts she can’t play the damn thing anyway and if you hadn’t brought it to life a bit then I think everybody would have gone home. Did she really say that she would not be doing it next year?” “Trust me you are a real hero no teacher dare tell her how bad she really is and laugh I don’t think I have ever laughed so much in my life!!”

I went back feeling wonderful and she saw me “Have you learnt your lesson??”
“DEFINITELY”!!

LOL

There never was another concert.

the ignorance about epilepsy is overwhelming and I didnt know this - till I had a violent attack at work my cowrkers dropped a bale on my head and left me to die in the warehouse alone - only thing I got up and walked away from the scene and no one recorded the incedent and - I have had Grand Mals - they are pretty much controlled with meds unless someone smokes a ciggarettes and then all good days go to bad and i cannot have any brain activity - its like my brain shuts down from the toxis second hand smoke and I cant function. MY NEIGHBORS FOUND OUT THIS BOTHERS ME SO THEY SMOKE 24/7 IN FRONT OF MY DOORS AND I HAVENT OPEENED MY WINDOWS IN TWO YEARS SINCE THEY MOVED IN. HELP CALIFORNIA IS IGNORANT AT BBEST

Hi,

I have just read Peter's continuation on the anniversary of the epilepsy association, this month about the sixties.
All interesting and I hope it will give some satisfaction to the young ones of today.

However, after reading the information about myself losing interest in life, so had psychiatric treatment there was no explanation why this happened.
As you know a teenager's life can be a bit confusing, with or without epilepsy.

With me, as with many, there were added complications:

'I went away to school, where, in those days, one was entirely left to oneself, no house mistress etc. The headmistress had been at the school for 40 years, so with all old-fashioned ideas.

In those days we took our, what we called O'Levels (GCSE) at the age of 15. It was when I was coming up to the exams, I started to get seizures at night so waking up the others in my dormitory, for this reason I had to leave the school where I was happy and missed my classmates, along with the exams, when I feel all that was needed, at that time, was someone to reasure me about the exams.

Having to leave this school was a big down turn in my life; the school where I next attended, I was a day girl. While attending this school, I was rejected by a vicar when he stopped collecting me, with his daughter, after I experienced a seizure in his car.
My parents did what they could taking me away for various wonderful holidays during this period.
However, the negetive side of having seizures didn't stop there, as when I was 16, I overheard my GP tell my mother that the only help for me now would be to have a brain operation, which in those days was hardly heard of as the labotomy began in the fifties by a Mr Murray Falconer and his team at the Maudsley Hospital in London, but it was only possible for a very few. It was after hearing about having to have this operation, I felt very much alone, I had experienced enough over the last two years, so didn't know which way to turn.
For this reason I was given psychiatric help which did make me feel more positive when hearing the psychiatrist confirm that I wouldn't need an operation.
After this life changed, with a secretarial course and an exchange to learn Spanish, despite going through with the labotomy in 1970, even then it was the talk of the town!

Sorry if I have gone on a bit, I just thought Peter's remark had a lack of information, why this happened.

Catherine Holman

I would like to comment on your article in the December issue about seizures and depressions.
Isn't it possible that the AEDs have caused these depression and not the other way around?
When my son was on a very high dose of Keppra (plus Tiagabin) he not only developed a personality change but had very bad depression as well as hallucinations other side effects.

I have just finished reading your magazine and numerous articles have caught my eye. Firstly your letter about difficulty in getting epilepsy medication when you order your repeat perscription. On numerous occasions in the last 6 months I have gone to the pharmacy to collect my medication and am told I can only have a few tablets as they are having difficulty with the supplier. I am asked to come back "tomorrow" on nemerous occasions and they still don't have it, it is really distressing me as im panicking i'm going to run out and miss a dose.
The article about Briony getting picked on with her epilepsy rang bells with me as mine started when I was 7. I was lucky to have one true friend who has stuck by me since pre school and hasn't been phased by my seizures but the main thing I was picked on was for never drinking alcahol, being told I was weird, uncool and go on it's ok to drink when after seeing the state my sister got it after her nights out and being kept awake by her being violently sick or told off for dancing on tables put me right off and thought I was better off without it! At least I can recall what fun I have on nights out!!!. And as for your article on depression and someone mentioned the effects of anti depressants andf epilepsy. I was given reboxetine the 3rd time I attempted to take my own life and suffered no side effects, but previously I was given seroxat and suffered 9 seizures in a row which was unusual for me.
But I have suffered depression for 5 years now. I have tried numerous AEDs and suffered various side effects ranging from hallucinations, severe depression. I really enjoyed your article and also want to thank your volunteer at the London marathon last year who kindly helped me out after I finshed my run!!! I lost 10 stone to run the marathon and completed it in just over 4 hours, but to think I can go from being on such a high then to slashing my wrists in front of my boss and running out of work to throw myself under a bus just a few months later is scary.
I hope to hear from you soon
Sarah Reid

I would like to share my story with other epilepsy sufferers.I had a dog given to me as a companion in 1984.His name was Ben.I had him as a gift from my former husband. When we went to pick him up,Ben jumped up at my then husband,but when he saw me he sat back down and looked at me as though to say,Oops,I mustn't jump up at you must I? So he sat back down and gave me his paw instead.Anyway,when we got Ben home he would watch me like a hawk. He soon picked up all of my 'triggers' and knew when I wasn't feeling well. He would even know if I hadn't taken my drugs,he would stare at me then at my drugs & then back at me with a very disapproving stare.Sometimes I would be restless during the night,(he would sleep on the floor,at the foot of the bed) then I would know that happened during the night & that Ben was worried about me. He was a very faithful friend, and as I like to put it,'my canine partner'.I had him in December 1984 aged 2 years 3 months & lost him on 9/9/99.So this is for you boy,you saw my through all my ups & downs R.I.P.darling (10 years on 9/9/99)xxx P.S. And you were un trained,I'm proud of you & never forget you.adult