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Holly - Interview 32

Age at interview: 26
Age at diagnosis: 18
Brief Outline: Holly was diagnosed with epilepsy when she was 18 and has had both absence and tonic clonic seizures. She has had a seizure alert dog, Elvis, for 5 years and is hence pretty much seizure-free. She is on pregabalin and Keppra (levetiracetam).
Background: Holly is 26, single and lives on her own. Ethnic background / nationality' White British.

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Holly says she had 'the world's worst drug change' when she was simultaneously on high doses of...

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Holly says she had 'the world's worst drug change' when she was simultaneously on high doses of...

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The second year of my PhD I had to suspend for six months because they took me off carbamazepine and were putting me on clobasam, and it was the worst drug change in the world ever. I pretty much couldn't get out of bed, and I was just really sick and I was just a complete liability, couldn't stand up, kept falling over. Not good, that was a pretty horrific one.

They decided that they couldn't just take me off the carbamazepine and just leave me on the Keppra (levetiracetam) that was too dangerous. So they had to build up the clobasam while I was still on the carbamazepine and the Keppra, so I had three drugs all at quite high doses, all with you know interactions and different side effects. I was just incredibly unwell, I mean, there's just no other way of putting it and I like I knew that I wasn't going to be able to work pretty early on so I suspended. Because you know the length it takes you to do your PhD is quite important isn't it, so I suspended so the clock stopped on that and I didn't have to worry about that anymore. I was living at home because of this because I knew this was going to be happening and everything. So I had that kind of support and people to look after Elvis [seizure alert dog], because if I'm completely incapacitated that's a problem. I pretty much slept for two months I'd say, and I just couldn't do anything, I hardly even remember those two months, I really don't remember them at all, Elvis hardly left my side, and he had to be dragged out on walks, he didn't want to go. 

I was just vomiting the whole time and then that was really dangerous because then I wasn't keeping all my medications down so, doctors were having to come out all the time and stick injections in my arse which was really embarrassing and they kept saying that maybe I should go into hospital but I really didn't want to do that, 'cos I wanted to be with Elvis.

'Then the weirdest thing started happening like I started getting better, and I got better, and I got better and better, until I realised that I'd got too much better and I was actually completely manic and I couldn't stop. So I'd gone from being completely, semi comatosed, to not being able to sit still, not being able to slow my brain down, kind of thinking about things all the time. I decorated two of my parents' rooms, I painted like virtually the outside of the building, apart from the bits up ladders obviously. I completely did their garden, I just was like a whirling dervish and I couldn't stop but then that was really dangerous, because I did stop because I would have warnings and I would have to stop. And they were actually more frequent, but that did settle down eventually, because as they increased the clobazam even more I just went back to being knackered all the time.

 

Elvis knows how to press the panic button if Holly has a seizure but he also to press it just to...

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Elvis knows how to press the panic button if Holly has a seizure but he also to press it just to...

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I know all his moods too. I know this nightmare mood because I've encountered it quite a few times. I know when he gets a look in his eyes he's just not going to listen to what I say. Well I know when he's going to try and do something naughty, and he does naughty things all the time and they make me laugh. I like it that he's not just a doggy robot, you know, he works hard but he plays hard and I think that's the way it should be.

Like when I was doing my PhD at Uni, I lived with one of my friends and we both had a panic button and everything set up in there, and I was just ignoring him, not because I'm mean but because I wanted to be doing something else, and I wasn't giving him the attention that he wanted. And he looked at me and he walked over to the panic button, looked at me, and then he just pressed it [laughs], as if, 'This'll get your attention.' And it was just brilliant, I just thought that was such a clever dog, and so funny. Also because when he presses the panic button all these paramedics come who just think he's wonderful and he gets fussed, and treats galore and I think that's what he wanted. He wanted them to come, but I don't think he realised that I can just cancel it really quite easily. Just the look on his face as well that he did it on purpose. Total like, 'Right, I'll show you.' He was just brilliant, yeah and I liked that and thought that showed character and that's nice.

 

Holly describes having a seizure in a seminar presentation abroad. The main triggers were jetlag...

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Holly describes having a seizure in a seminar presentation abroad. The main triggers were jetlag...

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One of the problems about going abroad was that I just had the most horrific jetlag, the problem was jetlag. , everybody says that when I got there that I should stay awake for as long as possible because then I would sleep right through. But instead I stayed up late and then I woke up at half past six UK time, because that’s the time I would wake up every morning, so I had like an hours sleep and then I went straight into the conference the next day, and sat through, well conference can be quite tiring, meeting all those people, pretending to like them and be polite and al you know, feign interest in their topics you know or whatever,  and then we went out that night, ‘cos we were away so we were totally going to be making the most of it,  and that night, you know so, you again I thought well I’ll just use the same philosophy, I’ll just stay awake as long as I can, so I stayed up until gone midnight there and then I woke up at half past six in the UK, so I had another hour and a half’s sleep, or something like that.

So yeah by the second day, third day, that I was away, anyway I’d had like 2 hours sleep or something insane like that and then that morning I had to do my paper, which you know is not exactly relaxing, so I’d had no sleep and I was exhausted, and I didn’t have Elvis, and so I was stressed because I didn’t have Elvis, and because I was tired do you know what I mean? And everything just added together and so I did my paper, I was half way through this is what I’ve said, on the stage behind the lectern, and then I went down, and my friends ran towards me to help, luckily I was in a hospital already ‘cos that’s where the conference was, so that was handy, , but nobody listened to my friends saying give her ten minutes to see if she can just come out of it herself, , anyway I ended up in A&E, and then you get charged for the privilege, you know they held me hostage, you know they did tests that they really didn’t need to be doing, , you know, yeah getting doctors to come and see me who I said I didn’t really need to see, and wouldn’t let me go, and yeah then they charge you for it. I was not impressed, anyway, but yeah that was that.

 

Holly describes the cognitive problems she had. She couldn't remember letters of the alphabet but...

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Holly describes the cognitive problems she had. She couldn't remember letters of the alphabet but...

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By the time I did my second year exams my medications had all been changed again I was struggling quite badly. Despite you know, as well as the tiredness, and the dizziness and the double vision, and my memory being really rubbish and my concentration being pretty shocking I also had these what they called cognitive impairments, which I think pretty much the memory and the concentration and all of those things are cognitive impairments. But these were special cognitive impairments, particular to this medication, which meant that I would try and write a sentence, and half the time I wouldn't get to the end of it remembering what it was that I wanted to say. Then when I would get half way through a sentence then I wouldn't be able to remember how to spell the simplest word, like law, you know I would just hit this wall and then by the time I remembered how to write like, spell the word law, I couldn't remember what on earth I was trying to write. Then it got to a point where not only would I not know how to spell the word law, but I wouldn't be able to remember what the letter L looked like. You know I'd just sit there going, what, how do I, what? And I would just be so confused and that was really horrible, 'cos I actually felt I was losing my mind, that was really unpleasant side-effect, so the question was how was I going to do three and a half hour closed book exams when I couldn't even remember the alphabet [laughs]. Let alone anything else, so then they decided that I should do them on a computer 'cos at least then you have a range of letters to choose from you know and hopefully looking at them, and it worked. You know looking at the letter L, I was never kind of like, and 'Oh I don't know which one.' It was always, that never happened, it was only when I tried to get the brain to tell the hands which would move the pen, I just didn't seem to be able to make that kind of pathway, but looking at them I was fine.

 

Holly split up with her boyfriend because she felt too dependent on him and their relationship...

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Holly split up with her boyfriend because she felt too dependent on him and their relationship...

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I went home and waited out the year pretty much, broke up with the boyfriend, the wonderful boyfriend, pretty much traded him in for somebody else, despicable behaviour. He was kind of a, like a real reminder of like a really bad time you know. And I don't know, I think because he had been so great, and I had been so dependent on him, and you know everything had been really intense, kind of really difficult to change that and he didn't want me to not be. I don't mean to make him sound like some kind of nutter who gets off on people being unwell or it's not like Munchausen's, whatever, it's nothing like that. I don't know, I just needed a new start and that involved a new boyfriend [laughs]. Just whole new, everything really, yes so, but we're still really good friends. I think when you have that, sometimes bonds can be forged in fire, but even now he's still a bad weather friend, so it's only really when I'm miserable or something's gone really wrong or I'm just I don't know, he's always the person I want to talk to.

 

Holly was really scared at first but her boyfriend's sense of humour helped her.

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Holly was really scared at first but her boyfriend's sense of humour helped her.

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But luckily I had a rock, my then boyfriend. He was just incredibly good. He was always there and it was difficult as well because I was really scared, like the first few months, I was just scared because I was just having seizures all the time. I didn't want to be left by myself, I didn't want to be on my own, yeah I was scared and a lot of that kind of fell on him. He was awesome and really accepting and he made things quite funny you know. You can have a really dark sense of humour sometimes in really bad moments and that was really important. Like we'd be in hospital and he'd nick the, you know the thing that monitors your pulse that goes on the tips on your finger, he'd take it off, and when you put it on your finger it kind of glows red, so he was pretending he was E.T. and generally he was just a bit of a child. But, I really needed that kind of, that kind of side of things.

 

At first Holly didn't want to accept any help or be treated differently because of her epilepsy.

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At first Holly didn't want to accept any help or be treated differently because of her epilepsy.

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I did struggle during my first year of the course because I was still fitting quite a lot, and I was also had this thing in my head that just because I was going to be unwell quite a lot of the time, I wasn't just going to be unwell and then study. No, no, that wasn't the life that I was going to lead, the life I was going to lead was pretty much, party and unwell, I wouldn't study, which was a really ridiculous attitude to take, quite irresponsible, don't do that kids. I don't know, and it was kind of weird as well because part of me really, really appreciated the fact that I was at university because I'd already had it taken away from me, so I was really determined to make the most of it, and not want to stuff it up, and I think that's why I kind of socialised so very well because I didn't wanna lose that as well. But I was I think part of me that took quite a long time to realise that it wasn't going to be taken away from me, 'cos I think part of me just thought well what's the point, you know. They're probably gonna change their mind anyway, so maybe I won't work quite as hard, but hey it turns out I'm actually just quite good at what I was studying and despite minimum effort being put in, maximum outputs were gained, and I got really good grades, and won awards and that was nice.

But I did it all myself, and I just wouldn't accept any help and I was really stubborn and I think part of it was because I didn't want it always to be, 'Oh well you know [participant's name] is doing well but she's got epilepsy, so that means she's doing really well considering.' I didn't want any kind of special measures taken because I think I wanted to do it despite the epilepsy, and I think I didn't wanna make a fuss.

 

Holly says exams are a 'rubbish way' of assessing somebody with epilepsy.

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Holly says exams are a 'rubbish way' of assessing somebody with epilepsy.

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My first year exams were three and a half hour closed book papers, four of them, and you didn't have any, well coursework was minimal, only one subject had a piece of coursework and that was only 20%, the rest of it, and it wasn't modular either. It was completely linear so you studied all year, and the only assessment you had was this three and a half hour closed book exam. Now that's pretty tricky when you have epilepsy because a) you can't guarantee you're gonna be conscious when the time for the exam is, and secondly the medications that you have to take generically they all pretty much have similar side effects, some of them have weird and wonderful things that you'd never anticipate, you can pretty much guarantee you're gonna be knackered, you're gonna be quite dizzy, you're gonna be sick, you're not gonna be able to concentrate and you're memory is gonna be short. So doing three and a half hour closed book papers is a pretty rubbish way of doing any kind of assessment for somebody with that condition.

 

Holly stayed in a hall of residence for disabled students. It was really practical and she made...

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Holly stayed in a hall of residence for disabled students. It was really practical and she made...

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It was also really great because it [halls of residence] was a three minute walk from the department, so I could crawl out of bed and like you know with five minutes before my class and still make it on time, and that was quite handy actually because I think on the dark days, when you're not feeling very good for you know because of seizures or because of medication side effects or, because of hangovers, or, because of I don't know, whatever, sometimes you know if you knew you had to walk for twenty minutes to get there, you probably maybe wouldn't bother. But it kind of did maximise my chances of making it and it was really close to the library and yeah it was really central and actually it turned out to be not such a bad thing as well, because all the people were awesome people you know, and they were my friends and it was such a beautiful place to be, I mean I've never ever lived anywhere, so supportive. Everybody you know really was rooting for everybody else, and helping each other, and even though everybody's impairment effects if you like, or experiences, or needs and everything were so very, very different, we all felt pretty united, and that was kind of a really nice thing, yeah I really did enjoy being there.

 

Holly felt angry about the way people behaved after the diagnosis.

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Holly felt angry about the way people behaved after the diagnosis.

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Like the first few months of after diagnosis and then, I started getting a bit angry, yeah, I got a bit angry. I got a bit angry about the way my friends had treated me, I felt a bit angry that, this isn't how it was, but it was how it felt at the time, that my parents were making it about them, that made me angry. I felt angry that my doctors kept telling me that I was just depressed and seemed to be discounting this completely awful way that I was feeling, that made me angry.

 

Holly describes her typical day with Elvis.

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Holly describes her typical day with Elvis.

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Well Elvis likes to get up really early in the mornings so I had to learn to get up in the mornings. He's just so excited by every new day and it's kind of infectious so he lies there and waits and as soon as I kind of start opening my eyes or anything, or move he's just wagging and he's just so excited. And if I haven't quite opened my eyes yet but he's thinking I probably should be, he does this thing where he puts his nose underneath my head and lifts my head off the pillow. Oh it's just the most annoying alarm clock in the world, but quite wonderful as well. And you know it's nice to be greeted every morning by somebody who's so pleased to see you, you know. It's just quite nice, so yeah we get up, first things first, Elvis needs feeding, Elvis needs to go to the toilet, they're pretty much done. It's not that much fun standing outside in the rain in your pyjamas picking up poo, but you know it's got to be done. I do it, you know looking after Elvis, and then that's Elvis sorted pretty much, that's all. He doesn't take him long to do his hair and things like that, and then I can get ready and then Elvis once he's had an hour for his breakfast to go down kind of thing, and that's handy 'cos that's pretty much as long it takes me to eat my porridge, do my hair, have a shower, do all those things. Then we set off and we go to work, we walk to work. It's a really beautiful walk to work and because Elvis needs his exercise and I just kind of think he's gonna be sitting under a desk or something all day, then he really ought to have stretched his legs and had some fun before he has to do that. I think if I'm gonna have to sit at a desk all day, I ought to have had a chance to stretch my legs and have some fun as well, so that's what we do. 

An average day, we've got a pretty much like a desk job I guess, sometimes I have meetings and things, and soon we'll be travelling a little bit more but I don't know how that's gonna work out yet. He entertains everybody in the office, keeps everybody on their toes and he just looks after me I guess. And lunchtimes I'll take him to the park so he can run around with a toy, use the facilities as it were. Then we go back to work, work the afternoon, and then we walk all the way home. In the evening, sometimes it can be a bit difficult with Elvis, he's a creature of habit, and he likes to be fed at certain times, so it takes a bit of planning. If I know I'm gonna go out of an evening straight from work then I need to make sure I've taken food into work so I can feed Elvis. I've been caught out on that before that I've thought that I had spare food, see my desk drawer's a little bit different to everybody else's so I've got all the dog's toys, and poo bags, things I need for walks, and there's another one that's like dog food, and the other one is dog bowls. You know like most people have staplers, envelopes, you know. They're Elvis' drawers so I got caught out once that I had forgotten that I had given him all the food that was there, and I hadn't bought any more in. And it's not fair to then drag him to a cocktail bar or a pub or something and make him sit there until like 9 or 10 at night, he's not been fed and well he wouldn't stand for it anyway I don't suppose. So I've been caught out before and I've had to rearrange my plans to meet them later or just cancel them 'cos I've had to come home and feed him which is a little bit annoying.

 

When Holly was diagnosed with epilepsy she lost her new friends from Uni because she 'wasn't good...

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When Holly was diagnosed with epilepsy she lost her new friends from Uni because she 'wasn't good...

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Just life was really good, and then all of a sudden I can't remain conscious for a week, and keep yeah., I get thrown out of my course, I have all the physical effects of loads of seizures, new drugs, all the side effects of that and all the people who I'd met at university and I thought were gonna be my new life long friends, they didn't really wanna know. You know now I wasn't really good fun anymore, now I wasn't going out clubbing, you know planning a night out then having the debrief the morning after over a cup of coffee to plan the next night, once my life had changed like that they just, they didn't wanna know., they didn't wanna be helping me, you know they didn't wanna be associated with somebody who wet themselves in public, when I was having a seizure not just generally [laughs], you know they didn't want that, they didn't want to, one of them said you know, they didn't come to university to be a carer. And quite right they didn't, you know that's fair enough I think in a way, but I still think that they're bitches, oh god I shouldn't have have said that [laughs].

 

Holly says the greatest compliment anyone who knows her well can give her is 'to take the piss'...

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Holly says the greatest compliment anyone who knows her well can give her is 'to take the piss'...

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I just think it's [humour] really important like when I would be in hospital and I'd be really unwell and people could come in and make me laugh, that was a really wonderful gift. They could leave their grapes and whatever behind, just being able to make me laugh and I think being able to laugh at yourself is one of the most important things. And I always think as well like if you can' a greatest compliment anybody can ever give me is to take the piss out of me. I know that sounds, but that means that they're kind of comfortable with me and that's nice and I just think that's the best compliment. I don't mind it when people take the piss out of me, about having epilepsy as long as it's actually funny.

 

After Holly had had Elvis for a few weeks, she realised he was barking every time she was about...

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After Holly had had Elvis for a few weeks, she realised he was barking every time she was about...

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I got a PhD scholarship and I started doing my PhD the following September, and the whole epilepsy experience changed because the summer before I started my PhD I got Elvis. My GP came up with the idea.

I've got Elvis in the summer before I started my PhD and things have been really very different since then. So Elvis is a wonderful dog and he was going to be a seizure response dog. So the idea was going to be that Elvis would, when I spontaneously started break dancing at inappropriate moments, and he would know that would be a bad thing, and he would then go and get help. I've got like a panic button, so things like that he would press, and he would bark a lot and make a bit of a hoo-hah, and just go and get help. So that would be good and that would help make me feel safe and that would be a good thing.

I'd had Elvis for about six weeks and he started barking once and he was sitting at the bottom of my chair and he barked, and I'd never heard him bark before so well I didn't hop down, more like I leapt down, off this ridiculously high chair, and then I had a fit. And that was really weird, I didn't know anything about it, and everyone just thought, oh, didn't really think anything of it, just did what they have to do when I have a fit. Then over the next two months I must have had I don't know, six fits maybe, and it became obvious to everybody around that Elvis was getting agitated and then barking before I'd have a fit, and it got to the point where I even remembered it, which means that Elvis had barked five or six minutes before I'd had a fit. 

So we talked to the support dog people about this, and they were just like, 'Oh well that's incredible. Do you think he might be intuitively telling you?' And I was like, 'Well yeah, that's what I'm saying.' We went up and had residential stuff and, yeah he was really, really good at it and just through everybody around him giving him lots and lots of positive reinforcement when he told me I was gonna have a fit, then he just got better and better. And it got to a point where Elvis could give me 15, 20 minutes warning before a fit, and that was great 'cos I could phone somebody, I could sit on the floor, or lie down with a cushion under my head, not to be in the bath, you know, the idea that I could even have a bath was like a new thing you know, because Elvis would be able to tell me it.

 

When Elvis gives Holly a warning, she injects fast-acting medicine into her gum with a syringe....

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When Elvis gives Holly a warning, she injects fast-acting medicine into her gum with a syringe....

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Now what I do is I have midazolam, buccal midazolam which is a liquid which you inject just through a syringe into the gap between like your gums and your lip, on the bottom of your jaw, and squeeze it through there. I don't really know much about it but I think it's something about the cells, or something or the blood being really close, there's not that much skin or that much barrier and so it gets into your blood quite quickly and it affects you quite quickly. Because Elvis now gives me 20 minutes notice and the buccal midazolam takes 10-15 minutes to start having an effect I don't go into seizures any more and that's nice.

 

Having Elvis has enabled Holly to live independently but has brought some new pressures and...

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Having Elvis has enabled Holly to live independently but has brought some new pressures and...

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I think things have really changed with Elvis. I kind of say this quite often so I sometimes get a bit bored of saying it, but I kind of feel a bit sometimes that I swapped one set of problems for just a completely different set of problems so rather than being scared you know those kind of voices, I don't have to have them [worries] any more and I don't have to have seizures anymore, I don't have to end up in and out of A&E anymore, you know I don't wet myself in public anymore. I don't do any of those things really anymore, 'cos I've had Elvis well it will be five years. Very few incidents since I've had Elvis, and we've got the drugs sorted in response to Elvis. Things have really changed so rather than feeling kind of chronically ill, feeling ill and being ill, I know feel really very well, really most of the time, just a bit sleepy and a bit off my face for a few hours every three or four weeks, but some people pay a lot of money to do that, so it's not such a bad thing. 

But now I have a this dog, who is not always the best behaved dog, or well he's not on duty at the moment so he has different levels of obedience, and at the moment he's showing none. He's a big dog and he takes up a lot of room and he needs looking after, sometimes you know when you've been very, very ill, sometimes it can be difficult to look after yourself let alone then have the responsibility for looking after this living breathing moving creature that is completely dependent on me. So whilst I'm completely dependent on him, it's kind of mutual, because he needs me to feed him and walk him, and pick up his poo. Which I do gladly because you know he's just lovely but you know there's this whole new pressure in my life and I don't want to talk badly of Elvis, partly because he's here, but also because he's great but he's also a restriction.

 

Holly explains how the equipment she got with disabled students' allowance helped with her studies.

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Holly explains how the equipment she got with disabled students' allowance helped with her studies.

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So, I did go and see the disability co-ordinator and I did apply for my disabled students' allowance, and I did get that, and I did get the swanky computer and the nice posh chair. And they did things as well that I didn't even know that they would do, so they did things like, they gave me a huge book allowance, so I could buy all my books, so I didn't have to go the library. Because of the medications that I took, sometimes I'd be really really tired during the day but then be like wide awake at night, but then the library wasn't open [laughs]. And I couldn't study when I was able to study, or you know if I'd had a fit and that had wiped out a day, you know I still needed to catch up on the work so this huge book allowance was nice.

And they gave me a librarian to work for me, not full time, I didn't do that much work, but she would, you know I would just send her like my shopping list of all the articles, the books that I needed, she would print and copy you know whatever, get a pile of them. So I didn't have to waste time accessing things, I could then maximise the energy that I had to do the proper work because they couldn't pay somebody to do the reading and the thinking for me unfortunately, they couldn't do that so that was the bit that I needed to do. So pretty much getting other people to take care of everything else meant that you know I could really focus on doing some really brilliant research [laughs].

 

Holly gets a lot of questions from people about Elvis and finds this nosy and rude because it's...

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Holly gets a lot of questions from people about Elvis and finds this nosy and rude because it's...

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Well, it depends what they ask and how they ask it. So, if they say, oh because Elvis' jacket says support dog on it, quite often people say, 'Oh, what does your dog support?' And I say, 'Chelsea football club.' and walk off. Or they say, 'What kind of support does your dog give you?' And I'll say, 'Invaluable.' and walk off. But on a train it's quite difficult just to walk off sometimes, if people say, 'What's wrong with you?' I say, 'Well that's none of your business. But I can tell you whats wrong with you is that you have absolutely no manners.' Because I think that's an awful thing to say to anybody, 'What's wrong with you', I mean' I find that really offensive and so they usually do get the wrath, to be fair. If people say, 'I don't mean to be nosy, but what does your dog do?' That's usually the one that gets the better response out of me and I don't know why. If people say, 'I don't mean to be rude but'' I usually go, 'That is a bit rude sorry.' But nosy is kind of a difficult one to come back with you know. Maybe I've not thought of something witty yet or maybe it's just difficult. 

And I think as well, I guess there is something in me that you just want to be nice and coming back with maybe a witty or a rude response isn't being nice, it doesn't make me feel good, when I don't tell people, and it doesn't make me feel good when I do tell people either. I feel like I'm sharing things that I don't want to share or I'm being really rude and there doesn't seem to be a way to win and to feel good. Rather than changing the whole of society's attitudes, somehow you know teaching everybody that it's inappropriate to ask such questions but that's a pretty difficult thing to achieve really. I don't know. But he's definitely worth his weight in gold, and that's 30 kilograms, that's a lot of gold [laughs].

I just don't think that people realise that when they're asking me what Elvis does they are asking me to tell them that I have epilepsy and that he's a seizure alert dog and that's quite a lot of personal information for you to be giving to somebody who you don't know and might not want to know. I certainly wouldn't want to know them because they're clearly really nosy, rude inconsiderate people, but that's kind of a bit odd, that every encounter that you have pretty much with a human being, Elvis is also part of that encounter, and whilst that's nice because at least I don't have to go through life by myself, people keep saying, Oh he must be wonderful company, and I'm like 'Oh yeah, I guess.' But I have to put up with all of this as well because he's very visible.

 

Holly describes how she and Elvis sometimes clash over their preferences in music, going to...

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Holly describes how she and Elvis sometimes clash over their preferences in music, going to...

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Elvis is a bit rubbish with loud bangs and I really like rock music, so I can't really take him with me to go to rock concerts. He's useless with fireworks, so for kind of two weeks of the year we're pretty much, as soon as it's dark we're here with Led Zeppelin on, really loudly trying to drown out all the fireworks. He's just a nightmare to take shopping. He has his own ideas of what I should be wearing, I want to go to Gap, he wants me to go to Next, you know and we will stand in the middle of the street with some kind of like Mexican stand off sometimes and it's just ridiculous. He doesn't like nightclubs, and that's fair enough, 'cos I think I've kind of grown out of them a bit too, you know I'm not really interested, pervy men, loud really bad music, there's smoke, oh but that will have changed now. Anyway he doesn't really like them too much either. 

I didn't take him to New York with me because he can, like he's injected, he's got passport, he's allowed to do what he likes pretty much, well as long as he's accompanying me. I think in that way I'm his assistance person [laughs], 'cos without me he wouldn't get to do any of these things. I didn't [take him to USA] because I figured I was only going to be there for four days, and it was such a long flight and he has to go through so many horrible vet things to get to America and security. Getting into the US is difficult enough with security without a dog, and I didn't want them putting gloves on and checking Elvis. I thought you know he doesn't need to go through all of that. But then at the same time I didn't want to miss out on the opportunity of going to New York and speaking at this incredible conference so it kind of felt a bit, there's a bit of conflict there as to what I should've done. With the benefit of hindsight maybe I should've just put him through it, I don't know, but he had a wonderful time.

 

Holly's story

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Holly's story

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Holly has just turned 26. She was diagnosed with epilepsy at 18 and the diagnosis affected Holly in a "major way". She used to go out clubbing and having a drink with her friends but was told to avoid alcohol altogether. She lost friends after her diagnosis and epilepsy had a profound impact on her social life in the beginning.

Despite trying different AEDs, Holly's seizures remain uncontrolled by medication. She also had a lot of very bad seizures, episodes of status epilepticus and would end up on a ventilator in hospital. Once, a major status epilepticus caused Holly to loose the preceding 9 months of her memory, a period of time she still can't recollect. She has also suffered from bad side effects from the medications. She is currently on pregabalin and Keppra (levetiracetam). 

Because the medications weren't working, Holly's GP came up with an idea for her to apply for a seizure alert dog. Holly applied, and got Elvis. This changed Holly's life in a matter of few weeks. With training, Elvis learnt to sense Holly's seizures 20 minutes in advance, and give her a warning by barking. This allows her to take medication which completely prevents the seizure coming on. Holly has had Elvis for 5 years and her life has changed from having very frequent seizures to being seizure-free. Holly and Elvis are now together 24 /7. Elvis comes with her everywhere; to work, the shops, pubs and travelling.

Holly lives on her own. She says she's really happy with her life now and she would hope things to stay as good as they are now.

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