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Stroke

Coping strategies and resilience

How do I cope with the changes
Disability often has a profound impact on daily living, routines, and relationships. The impact of a disability may be moderated by different coping strategies. Individuals who were interviewed coped with their stroke and associated lifestyle changes in many different ways. Some people felt frustrated, short tempered or emotional and took out their anger on those closest to them although they did not always realise that they are doing this until later. In other cases, a “tug-of- war” occurred between feeling down and frustrated versus feeling grateful for surviving and hopeful for the future. Some individuals noted, that there is “ a danger in life being too easy” and in hindsight, feel that their initial and ongoing struggles with stroke have made them stronger individuals.


Whilst most people discussed the negative impact on their lives some said that they had changed in positive ways too. This included becoming a better person with more humility, looking out more for people with disabilities or older people and having more enthusiasm for life. Other things that helped people with the emotional side of stroke included a determination to get better, or not to let the stroke beat them, and having supportive family and friends.  

 

He feels his wife has been there for him 100% but he has taken out a lot of his frustration at...

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Age at interview: 69
Sex: Male
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Husband' My wife's been 100%. Without her, I wouldn't be here today. 

Wife' I'm not perfect. I try my best [laughs].

Husband' There's no woman perfect [laughs] No, no, but that's it. I'm happy enough with my life.

Wife' Yeah. And I'm happy. I mean, I I've never ever went out, I've never drank, so I never ever went out, so maybe if I'd been a woman that went out a lot, I would have taken it worse but it doesn't, I'm quite happy in the house, so [laughs] with my wee dog.

Husband' Oh yes, aye. We don't '

Wife' As long as he's OK and it's just when he takes these, I call them maddies, when he, he gets frustrated and he starts shouting and'

[Talking at the same time.]

Wife' ' that upsets me.

Husband' That I curtail all that nowadays.

Wife' Well, you're, we've got you on tablets. The doctor gave you tablets.

[Talking at the same time.]

Husband' Well, I try.

Wife' Hopefully they'll help a bit [laughs].

Husband' They do help, aye, they do.

Wife' That I can't cope with [laughs].

Husband' No, neither could I. I don't want to start shouting.

Wife' I know. I know. 

Husband' Stupid stuff. I mean, I wasn't like that before I took the stroke'

Wife' No.

Husband' 'so how should I be like that now?

Wife' It's just the frustration the doctor said.

Husband' Well, I know that now like but'

[Talking at the same time.]

Wife' But it's horrible. I mean, the nurses tell me just to go out when he does it. Go out for a few hours but I'm always frightened in case he hurts himself because he bangs and [laughs] you know, and they said'

[Talking at the same time.]

Husband' Och, I don't do all that now. 

Wife' You did [my husband]. You, I mean, it's just a couple of weeks since you done it. 

Husband' Aye, but that's frustration. It's all over now. You know all that and so we get on fine.

 

He was frustrated because he could not speak and sometimes was impatient with his young daughter.

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Age at interview: 44
Sex: Male
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Wife' Mm hmm. Only thing is before the stroke, [my husband] was such a wonderful father. He never letting sit on the floor, always he is carrying and giving, you know, and teaching her, you know, like Tamil, English and taking her to the park and everything. 

Husband' Library.

Wife' Library, park, every day the library, park and things. After the stroke, he doesn't like the screaming noise, you know, child sometimes playful, sometimes screaming, you know. He doesn't, he said, 'Take the child away from me' [laughs] and he was so angry. When he says that, then I took, took my daughter to upstairs in the room and I play with her. My mother-in-law staying with him downstairs to talk to him and giving tea, cup of tea or whatever. I play upstairs with my daughter. After few minutes later, he will be fine or after one hour later because I think the mood will swing, you know, time to time, you know.

Husband' Speech 

Wife' That's the reason. 

Husband' Yeah. Yeah. Angry' speech. Angry. 

Ah. That made you angry?

Husband' Yeah. Yes.

With everybody and your daughter?

Husband' Yeah.

That's hard.

Although the frustration often did not go away many people felt that as time passed they coped better and were less likely to get upset.
 

 

She has problems with her speech and with daily activities which limit her life and can make her...

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Age at interview: 34
Sex: Female
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How about you? It's a huge thing to happen. How, how has it affected you emotionally?

[Sighs] I wish that had a stroke, I didn't, yeah' Sometimes tough and, you know, crying all the time but, you know' one year or, you know, that a stroke in, in Ireland, why me? You know, why? What's wrong with, you know, the voice, you know? And' Yeah. But other than that' carried on. 

Mm hmm.

Sometimes sad with, you know' why, you know, out of work, you know, socialising, you know, and I'm tired. Exhausting because, you know getting up, shower takes time, you know. Deodorant [laughs]. All, you know.

Some people alluded to sources of inspiration including people who have demonstrated exceptional resilience after a health crisis. In these cases, observing what others overcame created a motivating drive in rehabilitation. Further, an upcoming event such as the birth of a grandchild or an anticipated holiday served as important goal posts.

 

Douglas Bader, a famous spitfire pilot in the Second World War was a source of inspiration for...

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Age at interview: 47
Sex: Male
Age at diagnosis: 45
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One of my great inspirations was a person who I don’t suppose you know, his name was Douglas Bader. He was a Spitfire pilot for the RAF in the Second World War and he had a crash and lost both his legs. But his life was flying, just like my life was my nature conservation work. His life was flying and he got given two prosthetic legs and started to learn to walk on them. It’s usually painful and difficult rehabilitation for what was a very proud man. And he got to the point where he could stagger around on these two wooden legs well enough that he thought “Hey, why don’t I get back in a plane and see if I can fly it with no legs?” And, sorry there’s a plane coming over now.
 
Yeah, this guy managed to learn to fly again with just two artificial legs, and he was so determined that he actually went back and joined his old squadron of Spitfires and Hurricanes and actually went and fought in the Battle of Britain to defend the troops evacuating from Dunkirk. And he actually was quite a successful Spitfire pilot. Shooting down lots of German planes when he only had two legs. And there’s been times in my life when I’ve need to get up the steps or try and use a lawnmower or anything and I just think in my mind ‘Douglas Bader, Douglas Bader.’ If he can get in a plane and fly with two wooden legs, then I can do anything.
 
Wow. That’s very inspiring.
 
That’s the kind of thing.
 
Do you ever have moments where you feel frustrated?
 
I just break down and cry.
 
Yeah.
 
Lots and lots of low moments but since the very first time that I regained consciousness in hospital and friends and work colleagues started to visit me, I’ve always tried to be positive for the benefit of, of others as much as anything else. Almost like a bit of a shelf really, you know, I would say, someone would come and visit me and instead of saying, “Oh God it was horrible last night, you know, I couldn’t get to the toilet” or something, “and I did it in my bed because, you know,”.. it was very difficult at first with the, just a blob in bed that couldn’t move, instead of saying that I’d say, “Well I’ve managed to kick the end of the bed with my left leg,” or “I managed to move my, one of my fingers this morning.” You know, I always tried to, I always did try to tell people the good things that I’d achieved and be positive.
 

 

 

David referred to others who have overcome great odds to make important contributions to the...

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Age at interview: 62
Sex: Male
Age at diagnosis: 54
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I suppose really if I was being honest with myself, and I wouldn’t I wouldn’t say he’s a hero of mine or he gives me great inspiration but you know when I look at Professor Hawking. And I think of the things that you know, the problems that that guy has.
 
And I just think to myself, well I don’t know anything about physics or anything like that... or quantum physics or I don’t, all I know is that it deals with microscopic granules and particles and things like that. But I just think to myself now if that guy can do that... then you know I can go into the kitchen and make a cup of tea.
 
So that’s the way I look at it.
 
Douglas Bader. He had he was a spitfire pilot and had both his legs through, through his war service, had both of his legs amputated. And told he would never fly again. And he had artificial legs put on and of course he flew again. And I remember meeting him at a function and one of the officers there turned around to me and said, “This is Douglas Bader here.” And I looked up and that guy was walking as well as anybody could. And I thought, you know, well I didn’t think there and then like he’s an inspiration. But looking back then these people probably have subconsciously inspired me.

 

Setting manageable goals in care
Some individuals spoke about the important of managing expectations and setting reasonable goals in care.

 

Susan talks about the importance of setting small manageable goals in recovery.

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Age at interview: 67
Sex: Female
Age at diagnosis: 63
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I’m quite determined that for instance if my mother said, “No you can’t do that.” So I’d say, “Well when can I, when do you think I will be able to?” And she’d give me reasons and the whyfores and the wherefores. And I’d, that would allow me then to not feel the restraints of the exclusion for whatever it was that I wanted to do. And I always came in on time when she said be in by nine or ten, I’d always came in by nine or ten. And so I felt that this was kind of good training for “okay so I can’t do this now. I can’t walk now but I’m going to do it. So how long will it take?” Well I don’t know but I’m going to do a little bit today. Maybe I’ll just move one step today. Or maybe I’ll walk to the end of the bed today holding on. And then I could do that. So then I thought, right I’d better go and sit down again because I felt pretty wobbly. [laughs] So I’d walk back to the bed and because of the iron railings on the bed I could use my good arm to hoist myself back into bed.
 
Don’t try and think you’re going to do it all at once and run a marathon. Make, set yourself small goals. Think okay I can walk to the kitchen. Then you have to go and sit down again. Okay maybe a couple days later you’re feeling good so you think okay I’m going to walk to the kitchen and put some china away. And you don’t drop that. So you think that’s good I managed to do that without dropping it. So then I have to go and sit down again. And then it went on so ok I think I might be able to put the laundry in the, machine today. So I held on or wedged myself up against the wall you know with my funny arm. And put the laundry in with my right arm. And did a little bit by that and gradually... take nibbles not big bites at life.

 

David talks about the importance on focusing on one thing at a time during the recovery process.

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Age at interview: 62
Sex: Male
Age at diagnosis: 54
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So during that learning curve, feeling you mentioned things like frustrated and then wanting to persevere.....after, how did you get from frustrated to being persistent and wanting to persevere, how did that process happen? Or does it constantly go back and forth?
 
Acceptance I suppose. I think that’s the big word acceptance. And you know one thing that’s that that my specialist said to me, “Don’t expect to do too much at once,” he said, “Just concentrate on one thing at a time.” He said, “And if you’re breathing that’s all the concentration you need and when you feel comfortable about that, concentrate on something else.”And so it’s gone along the line and you just think, “Right well there’s no need to get confused or frustrated about this because after awhile you’ll be able to cope with it and then you move onto something else.”And all this breathing and things like that become second nature. I mean, I do have a lot of problems with breathing. And in fact I’m surprised I haven’t coughed and spluttered even now. But you know, if I try and touch my toes and stuff like that, I tend to choke. So, you know, I do have a lot of medical problems that prevent me from doing a lot of things. But yeah, generally it’s .... pretty good. Now I really do enjoy life.

 

 

 

 

Personalising rehabilitation
In some cases “personalised” rehabilitation techniques (e.g. rehabilitation tied to a hobby or interest) served as a useful coping strategy and facilitated recovery.

 

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

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Age at interview: 54
Sex: Female
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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.

 

 

Gavin spoke about his determination to get better and how incorporating his interests into his...

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Age at interview: 47
Sex: Male
Age at diagnosis: 45
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But because I was as I say, the media representative for a charity speaking in public and in front of a microphone or a television was an important part of my job and so, although I realised when I was discharged, you know, within a few weeks of my stroke that I could still speak I wanted to get out there and see if I could, prove that I could still do that oral communication side of things. So I joined, joined a local speakers’ club in [name of city] on, in October 2009 and I’ve been going ever since. I’ve been going for about 17 months I think it is. And I’ve actually won seven of the club public speaking competitions in that time. And in fact on Thursday last week I won their annual club speech competition, giving a, a talk about inspiring people to grow their own food. And the result of that means that I’ve got to go forward to the regional finals this Sunday. And so I’m very proud, proud but slightly nervous to be doing that.
 
But I always thought that all of these things like learning to speak better in public since my stroke, or if you like rediscovering and refining those skills that I had before and learning to walk and so on, even if I don’t get back to work they’re always going to serve me well. I mean, learning to speak better and, and communicate better and walk better and use my hand better, those were always going to be very useful things to do even if I didn’t get back to my job. So here I am. My arm has improved slightly from not being able to move it all to the point where I can easily bring it up to touch my chin. And the hardest thing is to actually straight, and raise it above my head. I sound like I’m in an awful strain but it is really difficult to actually hold it up there. It’s really, really difficult. And there’s a lot of people suffer from a thing from, called spasticity which is the uncontrolled clenching of muscles. And I suffer that in the bicep, which stops this hand being able to relax, down like that it just always stays slightly cocked. But more importantly, I can’t open my fingers. So it means that I can’t, sorry, I’m not going to touch your microphone but if I wanted to reach out with my left hand I couldn’t open, you know, I couldn’t open the fingers. I’ve actually got one finger that works quite well, that’s my little finger. For some unbeknown reason my little finger works a bit but none of the other fingers will work. So I’m having to learn to write with my right hand, which is my non-dominant hand, or it’s my dominant hand now I guess but before my stroke I was left-handed. And so I’ve basically become a one-handed person that limps around. And I know that my determination has helped me a lot and got me through. I could have just sat in a wheelchair and given up but I wasn’t going to do that. I’ve done lots of cooking, I’m a keen cook and I’ve grown vegetables and I’ve done my public speaking.
 

 

Last reviewed June 2017.


 

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