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Stroke

Messages to others about stroke

We asked the people we interviewed what advice they would give to other people who have had a stroke. Here is what they said.

Your recovery

Many people talked about the importance of determination, perseverance, and patience in both physical and mental aspects of recovery. On the physical side, keeping up with physiotherapy and doing exercises on one's own were emphasised. At the same time, it was suggested that it is important to recognise personal limitations by balancing activity and exercise with rest. On the mental side, positive thinking, and goal setting were thought be to be helpful during the recovery process.

 

It's up to you to fight it and to help yourself.

It's up to you to fight it and to help yourself.

Age at interview: 66
Sex: Male
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It could happen to anybody but it's up to you to fight it when it comes because if you don't, if it comes and you don't decide, because I had a chap who was my friend in the hospital, I didn't know him until we met in hospital and because he was ill, he didn't even want to go to the loo or he want the nurses to help ever time 'Nurse nurse' things like that, you're not helping yourself. So when he's shouting nurse, I said, 'Why don't you?' he said, 'I can't, [name], I can't'. I said, 'Try. You're like me but when you try to go, want to use the loo' and he say, 'But you fall down'. You see. But if you don't help yourself, I don't think you, whatever medication they give you, they can't help you. Only self believe that because he can't do this, he can't do that, don't have to bring tea to him all the time. You understand what I mean? So you have to fight it yourself. That's what I meant over there. It helped me a lot.

 

You have to be motivated to recover and find ways to occupy your life.

You have to be motivated to recover and find ways to occupy your life.

Age at interview: 59
Sex: Male
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We ask people to give advice to other people that have had a stroke. What's been important for you in recovering from stroke? And what would you advise other people to do? 

The' difficult' sorry, it's diff, the'

It comes from yourself?

Yes. 

So'

Yes.

You have to be motivated'

Yes.

'to continue?

Yes.

Yeah. And what does that mean to, in terms of'

Anything.

'doing things?

Anything.

Mmm.

Good'

Driving, painting?

Drive. Yes. 

You have to find other things'

Yes. 

'to occupy your life'

Yeah. Yeah. 

'and give you purpose?

Yes.

 

Try to do as much as you can for yourself and don't rely on other people or you'll lose your...

Try to do as much as you can for yourself and don't rely on other people or you'll lose your...

Age at interview: 83
Sex: Female
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Well, to try and do as much for yourself as you can and not rely on other people all the time and I think a lot of people just, you know... I think they just sit back and let other people help them too much and I think that way, you lose your independence. Maybe I'm wrong but it's the way I think, I feel about it.

 

It's important to have something to look forward to and to set yourself goals to work towards, no...

It's important to have something to look forward to and to set yourself goals to work towards, no...

Age at interview: 66
Sex: Female
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Yes. It is, I think it is important to have something to look forward to because when we come out of hospital, rehab, whatever, you're in this little world of your own. You've got to get yourself back into the real world and so you've got to set yourself goals and projects and things that happen out there that you haven't been part of. You've been, you've been away from all that for a long time, so you've got to get yourself back into that and the only way to do it, I think, is to set yourself goals. Maybe little things to start with, you know, small things and then work up to bigger things, even if it's only perhaps, I don't know, just something that you can't do in the house, maybe like hovering or whatever, that you haven't been able to do. Set yourself a goal that you can actually do the hovering downstairs and upstairs all in the same day, things like that. Start off with little simple things and then work up to bigger things, you know. Maybe something that you want to do in the garden anything at all that seems complicated to you and that you think you can't do. Set yourself a goal and work towards that, even if it's very, very slowly. I think important to, to gradually work towards it and when you've done it, you'll feel very proud of yourself and you'll be able to set yourself another goal. Maybe a bigger one the next time but you'll go on and that pushes you forward and it also, when it happens after, just after stroke, I think it gets you back into the real world and that's very important. So I think goals, yes, I would say. Really, really important.

 

Take the tablets and do what the health professionals advise because they wouldn't be telling you...

Take the tablets and do what the health professionals advise because they wouldn't be telling you...

Age at interview: 63
Sex: Male
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Well take the tablets you're told to take and do as you're told. That's all I can say is that, you know, they wouldn't be telling you if it wasn't worth telling you, would they? 

Being realistic

The importance of setting reasonable goals and making the best of the situation was emphasised.
 

 

Gavin talks about fighting to recover versus acceptance.

Gavin talks about fighting to recover versus acceptance.

Age at interview: 47
Sex: Male
Age at diagnosis: 45
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But it’s important that people who’ve had strokes and brain haemorrahages don’t work too hard at it. That sounds like a bit of a contradiction, but you can get yourself very exhausted to the point where it then makes you incapacitated the next day.
 
Like for example, if I spent a few hours on my allotment doing something quite physical, which would be very difficult, I would be wiped out and I’d have to have a long sleep when I got home. And when I woke up after the sleep I would still feel pretty awful and probably the next day too. So it’s a bit of a juggling act to push yourself but not too hard.
 
And I’d love to try and help people, other people to achieve that balance in order to maximise their stroke recovery if I could.
 
Right, that’s really interesting.
 
So...
 
So finding a balance between trying to recover but not ...
 
Hmm.
 
... over...
 
Yeah.
 
... over doing it.
 
And I think one thing that’s quite useful to mention, a thing that’s been preying on my mind quite a lot for the last two and half years is there’s one group of people on, on the one hand that say you can get better, you’ve got to be determined, you can do it, you can walk better, you can do, everything, your eyesight will come back if you, if you in your mind you will it to happen. And then there’s another people on the other hand saying, part of your psychological and physical recover is acceptance, accept your condition, accept that your eyesight won’t come back, accept that you’ll probably always walk with a stick or in a wheelchair. And once you’ve accepted that, the acceptance facilitates greater happiness and it’s, you know, once you can accept it, that’s part of the process of rehab. So the two conflicting arguments are accept it and don’t accept it. It, don’t accept it means work hard and fight against it. Accepting it just means let it in, accept that you’re now Gavin that can’t see properly, can’t walk properly.
 
Do you think that you can do both?
 
Whooo.
 
Just listening to your story it sounds like...
 
Now there you’ve nailed the...
 
Yeah,
 
You’ve hit the nail right on the head. Can you do both? Yes. A bit of both. Sit on the fence.
 
Listening to your story ...
 
God.
 
... you know it really sounds obviously you’ve been very determined in your recovery but I also hear that you’ve accepted what’s happened. Did I get that right?
 
Well, have I accepted it? I have days when I don’t feel I’ve accepted it. I have days when I just think, “Damn, Damn, Why? Why did you do this to me? Why me? Why me?” I know that I just think, “Oh. I’ll worry about that later, I’ve got to get up and escort the kids to school.”

 

 

 

Individuals suggested that is helpful to get in touch with other people who have had a stroke such as through a support group. Individuals felt that it was important and helpful to communicate with other people who have had the same problem.  Being proactive by seeking help and care in the community was encouraged.
 

 

Get in touch with the Stroke Association for good information. It's good to meet other people who...

Get in touch with the Stroke Association for good information. It's good to meet other people who...

Age at interview: 64
Sex: Female
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I would say get in touch with the Stroke Association and Different Stroke because they have lots of wonderful information and read as much as you can and don't listen to what an awful lot of people say even for example nurses in the hospital because if you're not in a stroke unit, they won't have been, they won't have had, oh I can't remember the word. They won't have learned to look after stroke patients and a lot of their information won't be any better than what you've got. Try and find a stroke group. It can be useful. I'm, I'm sure it's useful to talk to other people who've had the same experience and Different Strokes, for instance, they do stroke groups that are exercise classes as well and we had somebody wonderful doing the exercise class but unfortunately she hurt it back and it folded up. If you can't find another stroke group near that you can get to and there are quite a lot around, hmmm, oh yes, I know what I was going to say. Try and if you don't already know someone who's disabled in some other way, try and get to know other disabled people because you'll discover you've got an awful lot in common, even if they haven't had a stroke and it's much, it's much easier then for people who've, who have maybe had quite a few serious things wrong with them and you can laugh about what you've got. You can laugh in all sorts of ways, whether it's where you're going to be buried [laughter] or all kinds of things and avoid like the plague [laughter] people who make you feel worse. That is so important and I think you've got to keep that in the back of your mind because, unfortunately, they keep popping up all over the place [laughter], even where you're not expecting to find them. You think you're in a group, like for instance in a church, where everybody's going to be very sympathetic and helpful and knowledgeable and, and it's not like that and it can really bring you down if you're with people that make you feel worse and you know, it's not legal to bash them over the head [laughter].  

Approach to life

Many individuals talked about the importance of self-efficacy (believing in yourself), accepting the condition but also being determined to improve and get stronger. Having a positive outlook as much as possible was encouraged.

 

Live life and smile a lot and be happy.

Live life and smile a lot and be happy.

Age at interview: 34
Sex: Female
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Live life and smile a lot' and' be happy.

Developing new interests and keeping in contact with friends was encouraged.

 

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

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

Age at interview: 54
Sex: Female
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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. 

 

Don't give into it, fight it and it will get better and you can have a decent living.

Don't give into it, fight it and it will get better and you can have a decent living.

Age at interview: 85
Sex: Male
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Oh the message is to don't give in, to really fight it because it will get better. If as long as you're prepared to fight the thing and say to yourself, I'm going to get better, it will do. But if you, if you give way, I think it's not good. It's, there's, there's only one way for a stroke I think is to, you know, really fight to get better and you will get better. Perhaps you won't get 100% better but you will get better and you can have a decent living after that. In fact, I'm sure of it.  

Don't lose hope, build up strength, take an interest in life.

 

Don't worry and try and carry on as normal as possible and think positively.

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Don't worry and try and carry on as normal as possible and think positively.

Age at interview: 83
Sex: Female
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[Laughter] Tell them not to worry [laughter]. Yeah. Try and carry, carry on as, as normal as possible. I think this is what you've got to do. You've got to have a bit of, a bit of strong willpower and not sort of just sit down and mope about it. You've got to carry on with life as normal as you, you're permitted to do, as normal as possible and think positively, which I do. I do [laughter]. 


 

Last reviewed June 2017.
Last updated August 2011

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