Interview 05

Age at interview: 54

Brief Outline: She had two strokes 3 months apart (aged 43) due to haemorrhages from arterial venous malformations. The second stroke caused right-sided paralysis and muscles spasm. Medication' baclofen (spasms), phenergan (anxiety), phenytoin (epilepsy due to a brain tumour age 41).

Background: Is a divorced career counsellor but is not working due to strokes. Ethnic background/nationality' White/English.

More about me...

This woman had her first stroke when age 43 and is now 54. She recovered from the first stroke but a few months later had a second. A test called an angiogram revealed that she had a condition known as arterial venous malformation (AVM), which was successfully treated with a procedure using stereotactic radiotherapy. 

Her strokes were due to bleeds from the AVMs in the left side of the brain. The second stroke paralysed her down the right hand side. She has spasm in her right leg, controlled with medication.

After the second stroke she had physiotherapy and regained total use of her hand and arm using her own technique of visualising playing the piano. She was in two different rehabilitation units where she regained enough recovery in her leg to walk with a limp.

After being in hospital for five months she returned home and lives independently. 

She developed epilepsy due to a benign brain tumour which was operated on 18 months before her stroke. This, too, was a genetic brain malformation. In the last 18 months her epilepsy has become more frequent and severe. This has resulted in the loss of a considerable amount of her long term memory - a controversial area in neurology - accepted by some neurologists, denied by others. This was described by Professor Duncan recently as equivalent to a boxer being knocked out constantly - i.e. has caused more brain damage. The loss of her long-term memory is more disabling than the physical after-affects of a stroke.

Experienced irritating muscle spasms which have continued after her stroke. She finds the muscle...

You said you went into the stroke unit to start with, can you just talk about what, you know, what happened when you first went there?

That was tough. That was really tough. I was put in intensive care for the first few days I wasn't allowed any medication at all and I had terrible muscle spasm in my, paralysed arm and my paralysed leg, all the time. So that I couldn't, I couldn't sleep and they couldn't give me anything, to help me sleep because I was under observation for 48 hours and that was awful, really awful. That was so uncomfortable because I had, the whole, the right hand side of my body had disappeared. I mean, that's what happens. I no longer knew I had an arm and a leg. It had just gone, vanished. I didn't have one anymore, except it kept, they kept moving without me moving them, and it was very uncomfortable all the time. So, no, that was, that was very unpleasant indeed actually. I was desperate to get out, and into the main ward. 

Did you get any help for the muscle spasms?

Not when I was under observation, no. They can't give you, me anything. But when, as soon as I got out of, observation, yeah, they gave me some drugs that helped my, the right hand side of my body to stop spasming.

Do you remember what you were on?

I know what I'm on now. I still take it but I don't know because, I mean, the medication is handed out in, hospitals and rehabilitation units to you in a little pot and you don't know what it is and you take it and obediently swallow it, so, I, I know that I was given medication ongoing for muscle spasm in my, arm or leg. Yeah. Muscle spasm is, is a nuisance, to be quite honest. Yeah. And I still suffer from it. 

So what do you take now for it?

I take a drug called baclofen now, which I've been taken for quite a long time, which I find does help. Yeah. Because it drives you insane, a muscle spasm. It's always at the end of the day, at night, when you're really wanting to relax and your leg suddenly decides it doesn't want to, and you want to tear your skin off because it's actually inside and you want to itch everything there is inside your leg. It's, a most irritating experience. 

She experienced extreme tiredness, which she describes as a neurological fog, which eventually...

Being tired?

Yeah. It was a bit like having the inside of my head lined with cotton wool, for the first couple of years so I was in a kind of vague fog and tired. I used to, used to need about 12 hour sleep. I mean, I was seriously, tired. Tired out. The whole thing was tiring. I think my body was shocked, and, I think for a lot of stroke survivors, I'm not sure, but I think they can stay like that. But I do remember an appointment with the, my neurologist where I went to see him where something had happened where the fog had gone and he looked at me in absolute amazement. [Aeroplane overhead] He could not believe his eyes. He said, 'I can't believe my eyes', he said, 'I never expected to see you come out' because he said almost, so many people don't. He said, 'I'm absolutely amazed because you've', you know, I don't know what the neurological description for it is but basically you've come through the neurological fog of a stroke, which lots of people don't do. 

She felt out of place being in a wheelchair in a world where she had previously worn high heels...

How long were you in, in the hospital there?

I was in the hospital, the major hospital for 7 weeks. Yeah. I would have been less if I could have got out quicker actually because I was, as I say, I was, I was not very happy in there although I did see quite a lot of my friends because I was in London, so lots of people came to see me. 

But one of the things I became increasingly aware of, was that I no longer belonged, and they used to want to take me out when I got stronger, in my wheelchair. They used to wheel me across the busy London road, I was, they were allowed to do this, and take me for a cup of coffee or something like that. And I went out into the world and I thought, 'I don't like this'. I used to walk out here in this world in high heeled shoes and I can't do that now and I don't want to be out here anymore and I don't belong out here in this world. And what happened to me in a way was hospital became home. It felt safe and it felt like where I belonged because I was newly disabled I also had a lot, a very bad short term memory problem, you know, my brain was quite, still quite fuzzy really. And I felt safe there, and the whole of the outside world that I absolutely love and I love London I no longer, I no longer wanted to be out there. 

And that was particularly brought home to me in a way because when I would go from the twelfth floor, which we were on, the neurology ward, down to the ground floor to the, physios, down to the physiotherapists, usually in lifts in the wheelchair, and that was when it started really because children were then my height and they'd stare at you, like children do, 'Hmm, what's she doing in there?', and I used to look up at adults and they would not look at me. They wouldn't look down. They would just, they would look and move their heads so as not to look at me and I thought, 'God, I'm an embarrassment, they don't want to look at me', and that made me think, 'I don't belong anymore and I'm different and I'm disabled'. And that made me absolutely determined to get out of the wheelchair. I was absolutely determined to walk. That I was not going to live in a wheelchair for the rest of my life because I had been told that I would never go home and that I would have to live in care for the rest of my life.

Says that residual damage to her brain from her stroke has caused epilepsy, migraine and...

Yet again, I always do it in my house, [aeroplane over head] here with a friend, who called an ambulance and I was taken to the local hospital around the corner here, and it was there that I met, the neurologist who remains my neurologist to this day and who is, a very intelligent and very, [takes deep breath], good man, having said which, he's made one or two errors, I think, as far as prescription drugs are concerned with me. But he, the first thing he said to me when he met me was, 'You've been having a very hard time, haven't you?' And he diagnosed that I was suffering from migraine as well as epilepsy. 

So there's a whole other side to my stroke that needs to be managed apart from my physical disability, which is, the residual, damage that's been caused to my brain which has, you know, caused it to misbehave, which can also interfere with my life quite considerably and effectively disable me in quite a different way from being physically disabled [aeroplane flying overhead]. So that was a very useful meeting, to meet him in there. And I became his patient, and a bit later that year, I went for my first appointment to see him and he said to me, 'I really do believe you're suffering from depression,' and I had no idea what depression was. And he explained to me that when somebody is put through constant medical, from my situation, constant medical trauma not just with the strokes but with trying to deal with epilepsy and going back into hospital again you're using up the serotonin in the brain and your brain can't make up, make enough serotonin to keep up with the demand and so you're basically running on empty. And so he put me on some anti-depressants for the first time in my life, which did work. 

She had a relatively rare procedure known as stereotatic radiotherapy to repair a malfunction of...

I've talked about the fact they diagnosed the AVMs, have I? I can't remember. Yeah, they did. Yeah, I did earlier on. Yeah.

Yeah.

Mmm. So all the time that I was, [clears throat], excuse me, [clears throat], during the time I was in hospital and rehabilitation units, I was waiting for the blood, or should I say the neurologists were waiting for the blood to disperse from my brain, enough for me to go and have, stereotactic radiotherapy on my AVMs because I had two, I think I said I had two. One is big, was big and very deep-seated and one was smaller and near the surface, too dangerous to operate on and so, in my last rehabilitation unit the grand pilgrimage was made to [a city in the north west], which is where, you have to go, to have stereotactic radiotherapy because it's, it's only done in three countries in the world, which is America, Sweden and the UK, and in 1996, it was only done in [a city in the north west], [laughter], so I was a friend went with me actually and I went all the way up to [a city in the north west], and stayed overnight in a hospital, [laughter], and they did a, another angiogram on me and the machine broke down while they were doing it. I remember this distinctly and so I had to stay in the machine with the metal helmet that they screw on to the bone of your head screwed on my head, stuck in a machine that was broken down, [laughter] which is quite unpleasant, and the relief when they took the tube out it made me cry, and'

Was it painful?

Yes. Because the anesthetic had worn off, very painful. Yes, it was. And, yeah, and I went to, into a, another hospital, I was driven to another hospital then, where there was this enormous machine like something out of a science fiction movie, [deep breath], with a big metal circular machine that I was bolted into basically. But I, you could take music and so I'd taken the man I'd made friends with in my first rehabilitation unit, who'd really taught me to fight, had given me a tape of rock music, when I'd left and I took the rock music with me up to [a city in the north west], because it's not very pleasant actually, to be bolted into this machine and because I had quite a lot wrong with me, I had to have quite a lot of passes in and out of there. I was in there for quite a long time. So I had rock music blaring out in this, [laughter], in this room, where I was having my brain zapped basically and they took some photographs of me afterwards wearing the helmet smiling because they're about to take it off actually. But I can still feel the numb points up here where they injected me in the head and where they drilled in to my head to screw it on to my head. Yeah. 

Do you understand what they were actually doing with the radiation?

Yeah. They're firing yeah, what they're doing is firing radiotherapy at, specifically at the specific points, at the AVMs. That's what they're doing and the waiting time to find out whether that's worked is two years. So I had to wait two years, to find out whether it had been successful or not.

Gave up smoking after her stroke but took it up again defiantly when she was taken back into...

Well, I was a smoker actually, I thought, I know this, sounds like you're justifying yourself really, but I don't drink alcohol obviously and I used to say, 'You've got to do something naughty' which is a pathetic excuse really but when I had the stroke and became paralysed, I stopped smoking, because you can't ask, actually ask for a cigarette, 'Can I have a cigarette?' when you're in intensive care, paralysed. And it was such a traumatic experience, I didn't even think about a cigarette and actually I didn't want one and I stopped and I was delighted. I thought, 'Wonderful, I've stopped smoking, great, why did I ever bother doing that?' 

But then, as it happens, in August of that year, I was put back in the hospital again very, being very ill with, they thought it was epilepsy but I think it was a migraine. And I thought I was going to die actually. The, what was happening to me was making me so ill at the time I literally thought I was dying, and, this is a piece of kind of self destructive negative behaviour really, which is when I'd, recovered enough in the hospital ward and that was in the days when you could, they had smoking rooms in hospitals, [takes deep breath], I remember thinking, 'Right, that's it, I've had enough, I'm sick to death of hospitals and all this stuff, I'm going to do something defiant.' Which is a defiant negative thing to do, which I admit is highly unintelligent and I went into the smoking room and actually sitting in the smoking room was an alcoholic who had, I'd listened to them stand around his bed and tell him if he didn't stop drinking, he was going to die, and he was going to die. And I looked at this alcoholic and I said, 'Have you got a fag, have you got a cigarette?' [laughter], and he gave me one and I sat smoking with this, he was a street drunk and I said, 'I'm a recovering alcoholic actually' and I don't think he believed me but I started to smoke again and I wish I never had, you know, and I really want to stop and it really annoys me. It really, really annoys me. Yeah. 

She regained movement in her hand by visualising playing the piano. Her physiotherapist was very...

You talked earlier about playing the piano but you'd played the piano before?

Yes.

Yes. Yeah and Could you just describe that again, you know, how you actually...

Yeah.

The technique that you used?

I played the piano, from the age of 7, so it was a kind, it was almost innate to me, playing the piano, and so I decided that, obviously with paralysis after a stroke there's nothing wrong with your body, it's perfectly alright. Why your body doesn't work is your brain won't talk to your body. So I wanted to, get, into my brain. So I had to find a way into my brain. So what I did was to imagine a picture of a piano keyboard in my head. I always closed my eyes and I could see this keyboard and, with my mind, I would make my mind press a note down that I could see, and the first time I did it, I got a tiny, tiny movement in my forefinger, just miniscule. And I thought, 'Goodness me', and I pressed the note down again and I got a bit more movement and a bit more, and then, a few days later I thought, 'I wonder if I can find another finger?', so I pressed the note in, of this keyboard in my head, I pressed the next door note down, and, the finger I'd originally found shot up in the air, they were joined together but there was a tiny little movement, in the next finger. So I practised and practised on what I called neural notes basically, and, within a day, I'd isolated the second note and I could move my second finger a little bit independently of my first finger. So that's, that's the technique I used and I just used that technique with notes for every single, but it's a very, I mean, the hand is a very complicated piece of machinery so I said, 'I have to find every single joint and every single connection in my hand and the way they all work in an integrated, to form the integrated movement of a hand'. 

When you said the physio, how did the physio react when you said that you were doing this?

She respected me doing it. I mean, I think she was fascinated by what I was doing. She'd never seen it before because I made it up, I invented the technique. She didn't stop me. She supported me. So what she would do is she would put my arm in a position that would facilitate or help me to then play this, keyboard, neural keyboard, in my head because obviously I'd no, no control over my arm. Yeah. And I, I didn't know I had an arm, which is the most peculiar experience with paralysis is you don't have, an arm or a leg. It just disappears. It looks like somebody else's.

She refused to have adaptations made to her house because she did not want it to reflect her...

[Laughter] when I came home, they did an assessment before I came home to see if I wanted, there needed to be any adaptations done to my house because obviously I'm in a house, I've got a house with stairs and I had to get up stairs. And I had an obsession about my house, not reflecting in any way the fact that I am now disabled. So I refused to, I didn't want another banister put up on the left hand side of the staircase. In fact, I've just had a banister put up on the left hand side of the staircase last year [laughter] but back then I wasn't going to have anything done. No, I wanted nothing. I wanted no trace of my disability, mirrored in my home.

Her parents were badly affected by the stroke and didn't initially come to visit her. She wanted...

Hmm. It is difficult. I think it's interesting the way families react to, things I think my, I mean, my parents didn't come and see me straight away, when I was paralysed. I think it was too much for them, actually so my sister was the first person to see me. She drove all the way down from, where she's, where she works and, which is not in London, and she was the first to see me the day after my stroke, and threw a strop at the nurses and washed me and did all the things she did. I remember she told me years later that what she did, she went home, shouted at her boys, her two boys she's got and sat down and wept. 

And your mum and dad came in to see you eventually?

Yeah, they did. Yeah, they did. But they were, quite overwhelmed by it all, really. Mmm. And I, I tend to be, or tended to be trying to look after them, to not, and that's a difficult thing when you're an ill person, because you know you're upsetting people, well, that's how I see it, and so you tend to want to try and' make sure that they see that you're alright. I know if I can make them sure, they can see I'm alright when I'm paralysed, I don't know, but I would try and do that. That's what I'm like. But things, I mean, the social worker in the first hospital I was in was brilliant, absolutely superb. Fantastic woman. 

Tell me about it?

Well, she, she was the one, I mean, she was the one that, I felt I could really cry in front of because I wasn't going to hurt her. She wasn't my parents, she wasn't, you know, I mean, she'd say to me, '[own name], your parents have told me how well you're doing, yeah, and they need to know that doing well isn't about being brave and stoic all the time because what you've happened to you is, is serious and very bad and it is OK to cry but it was her I used to cry in front of, [laughter], sometimes. Yeah. 

Never give up. Keep in contact with friends and others, develop new interests in new areas.

The first words that come to my mind is never give up. Never give up. And keep, make sure that you keep in contact with as many people as you can and that you keep a close network around you, of friends. But also, I think it's important to try and add some new, interests into your life. I've done some, quite a few different things. I've gone to art classes, I've done various different things. So it's like explore new areas that you wouldn't have explored in the past. That's what I would say. 

Has some mixed feelings about joining a support group even though he likes the idea of a group...

Can you tell me how you found out about that and, you know, if you've got any other experiences using support groups? 

I liked the idea of young stroke survivors, because it's very different to, with respect to older people, it's very different when you're 41 and disabled to when you're 75 and disabled. You've got a whole different range of issues to be dealing with because you're younger.

I mean, some of me thinks, 'Well do, what help will I really get from being around stroke survivors?' Now, maybe I'd get a lot actually because it's, it's like having one foot where I'd like to talk to people who've had strokes and then on the other foot that says, 'Well [own name]', one foot where I'd like to talk to people who've had strokes and the other foot that says, 'Well, really, you need to get on and go, move forwards, and integrate that into your life'. And I happen to have a close friend who has had a stroke, a major stroke as well. So I mean, he and I are in quite regular contact, so we can talk to each other about, how fed up we get with not being able to walk properly [laughter], or people pushing us in shops or, the sorts of things that stroke survivors want to moan about occasionally or joke about. And I prefer that with a friendship. Yeah. 

She visualised a piano keyboard in her mind. By pressing notes she would visually send signals to...

 

I played the piano, from the age of 7, so it was a kind, it was almost innate to me, playing the piano, and so I decided that, obviously with paralysis after a stroke there’s nothing wrong with your body, it’s perfectly alright. Why your body doesn’t work is your brain won’t talk to your body. So I wanted to, get, into my brain. So I had to find a way into my brain. So what I did was to imagine a picture of a piano keyboard in my head. I always closed my eyes and I could see this keyboard and, with my mind, I would make my mind press a note down that I could see, and the first time I did it, I got a tiny, tiny movement in my forefinger, just miniscule. And I thought, “Goodness me”, and I pressed the note down again and I got a bit more movement and a bit more, and then, a few days later I thought, “I wonder if I can find another finger?”, so I pressed the note in, of this keyboard in my head, I pressed the next door note down, and, the finger I’d originally found shot up in the air, they were joined together but there was a tiny little movement, in the next finger. So I practised and practised on what I called neural notes basically, and, within a day, I’d isolated the second note and I could move my second finger a little bit independently of my first finger. So that’s, that’s the technique I used and I just used that technique with notes for every single, but it’s a very, I mean, the hand is a very complicated piece of machinery so I said, “I have to find every single joint and every single connection in my hand and the way they all work in an integrated, to form the integrated movement of a hand”.

 

When you said the physio, how did the physio react when you said that you were doing this?

 

She respected me doing it. I mean, I think she was fascinated by what I was doing. She’d never seen it before because I made it up, I invented the technique. She didn’t stop me. She supported me. So what she would do is she would put my arm in a position that would facilitate or help me to then play this, keyboard, neural keyboard, in my head because obviously I’d no, no control over my arm. Yeah. And I didn’t know I had an arm, which is the most peculiar experience with paralysis is you don’t have, an arm or a leg. It just disappears. It looks like somebody else’s.

 

She describes her stroke as a bereavement.

It really is like a bereavement, a stroke. I mean, it really was like that woman had died, the one that wore high heeled shoes and, walked around and ran a business and, had a fantastic memory. I had one of the most amazing memories that I took totally for granted. There’s so much that one can take for granted, you know, I take walking for granted. I always think, “If only somebody had told me on New Year’s Eve 1995 that that’s the last hour I would have ever walked like a norm, a normal person because I would have walked all day and I would have thought about how wonderful it is to walk, because there isn’t a day that goes by, and I’m not being negative but there just isn’t a day that goes by that I don’t miss walking because I miss it. Yeah. I’m always trying to do it. Always trying to do it properly. My foot is, 95% paralysed still a lot of the back of my leg is very weak, my hip is weak, so, you know, I have some trouble walking it looks, I look, as if, I mean, obviously I limp, but it’s much harder for me to walk than it looks. Yeah. And I think that’s true. I can’t speak for other stroke survivors but I think, I have a good friend who’s had a stroke and, you know, we joke about how difficult it all is and how they, in quotes, just don’t know what it’s like for us. Yeah. And how much, I mean, I remember being, in the first rehabilitation unit I was in, where sometimes people would come in for the weekend, and I was talking to one man who came in, and I said, “Do you like it in here?” and he said, “No.” He said, “They’re very nice but I don’t”, he said, “I just come in here to give them a rest, my family a rest.” I remember thinking that night, “I wish we could have a rest.” I’d like to have a rest from disability but I can’t. There is no, you can’t have one. There is nowhere you can go to have a rest. It’s just there and it is a challenge, every single day, a challenge. I don’t mean to sound, holier than thou with that but it is, you know, it’s, I had the stroke in 96 and its 2006 now, and I still think about, I can’t walk without conscious thought and I still think about, the days I could walk. It took me a year to throw all my high heeled shoes away and I knew I was never going to be able to wear them again but I couldn’t throw them away, so I had to keep them, I kept them for a year, [laughter].

 

It must be very difficult to, to kind of reinvent life I suppose.

 

I don’t know that you do reinvent life. I think that I mean, I think that you, I mean, I being the kind of woman I am and, I mean, I had long hair, quite long hair, I had all my hair cut off. Right off, while staying with a friend. I mean, really, really short. The hairdresser said, “Are you sure about this?”, but it was because in a way I thought, “Well, this hair is the hair of her, it’s the hair of the woman, that could, that walked and was well and wasn’t, you know, and wasn’t disabled and I don’t want her hair anymore because I’m not her now. I’m somebody new. I don’t know who on earth I am but I have to start all over again and that’s what it, felt like for me. I was trying to make a new beginning, trying to find out who I am, and I’m still, to some extent, trying to, find out, out who I am really. It’s an ongoing changing experience for me, disability anyway.