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Stroke Matters – Making Sense of Stroke

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Bill

If you, or someone close to you, has had a stroke, there's one thing for sure. You're going to ask a lot of questions. Well in this short video we can't hope to answer them all, but hopefully after you've watched it, you'll have a better idea just exactly what has happened, and what's going to happen next.

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Bill

Most strokes occur in later life, but it can affect younger men and women too, and it affects each person in a different way. I was interested to learn that in the region of 10,000 people in Scotland have a stroke each year, so you're not alone. You're not the first or last person that this has happened to.

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Bill

In this video you'll meet people from all walks of life who've had to learn to cope with stroke and I hope that their experience will help you do the same.

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M

I had a stroke on Thursday 5 March 1998 and the only warning I had of it was from the Monday of that week I'd had a very bad headache that I just couldn't get rid of. No matter what I took, it just wouldn't go away, and on the Thursday morning I was in the bathroom cleaning my teeth and I suddenly found myself on the floor trying to find the toothbrush, and that was it.

F

Muddleness and mesmerised, you didn't know what – you just seemed to be – and I would say in another world but everything was so different, you couldn't think clearly.

F

It just happened during the night and this is me now.

M

It was just something completely out of the blue. I think whether it was related to stress, they just don't know because every stroke's unique apparently.

F

My daughter tells everybody that she got a new dad when he had his stroke. Because he's such a nice person now. Ok.

F

I knew what had happened because her face was twisted at one side and she'd no power down the left side of her body. She was – her speech had been affected and she was confused, and it all painted a picture to me of what, of a stroke.

Bill

Of course, I'm no expert, but Dr Peter Langhorn is. Peter.

Peter

Hello, Bill.

Bill

Can I start off by asking you quite simply, what causes a stroke?

Peter

Stroke's what happens when the blood supply to the brain is disrupted in some way, and there are two main types of stroke. The commonest type happens when a blood clot blocks one of the arteries supplying the brain, and we call this an ischaemic stroke. The other type is called a haemorrhagic stroke, and that happens when one of the blood vessels in the brain bursts, causing bleeding into the brain or over the surface of the brain.

Bill

So in laymen's terms, is it just like a blockage in a pipe?

Peter

Yes, put simply it's something like that. And what happens then is the brain cells are deprived of oxygen and other nutrients, and they become damaged and die. And the first effects of this can vary. It can cause weakness or numbness or tingling down one side of the body. It can cause difficulty with speaking or with swallowing, but the consequences vary greatly between people, depending on the person's age, their medical condition, whether it's a mild or severe stroke, and of course which part of the brain it occurs in.

Bill

Which part of the brain it occurs in?

Peter

Yes, different parts of the brain control different parts of the body and different functions in the body, and so depending on where the stroke occurs will determine which part of the body is affected.

Bill

I've heard it said – is this true? – that a stroke affecting the left hand side of your brain affects the right hand side of your body and vice versa?

Peter

That's correct, yes. You get left sided strokes and right sided strokes.

Bill

I see. It's getting clearer. Thank you.

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Bill

You know, a stroke is well named. For one minute you could be perfectly healthy, hale and hearty. And then, out of the blue, you have a stroke. Initially some people tend to be disorientated. Others are aware of a lack of power in their limbs. Some people slur their speech and find it difficult to follow conversations or find the right words to express themselves. Well, these communication difficulties, together with certain physical disabilities, can easily lead to anger and frustration.

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F

His writing was all mixed up as well as his speech. And he'd point and you'd say but I don't understand and he'd look at it as if to say well I know perfectly what that says! And of course he found that difficult, and we couldn't understand what he was saying or trying to tell us.

M

Uh huh.

F

But we got there in the end, didn't we?

M

Uh huh.

F

With a lot of hard work.

M

Well feeling frustrated I think is in general. That's because I can't do as much as I used to, particularly without my left arm.

M

Physically I still can't do what I could do previously because I mean – I mean, I played rugby up until about six years ago, rugby at 50, and I used to go to – and I was going to the gym three times a week and I was swimming on a Sunday – not every Sunday – but twice a month, 50 to 60 lengths, so you know, to have a stroke was – the doctor wondered why it was me. So did I. Most people do.

F

When I had the first stroke, the worst thing for me was when I found I couldn't work any more. [cries]

M

Yeah, it devastates your life. There's no question about that.

Bill

If you've had a stroke, well you'll know that the sense of shock is a very deep one. In fact, some people have described it as though a part of them has died. And it's perfectly natural to be angry and to ask why me, and be frustrated at this seeming inability to do things that once came as second nature. And a stroke doesn't just affect one person – nuh uh – it can affect the lives of the whole family.

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F

It was quite frightening at first because she'd always been active and independent, and at that time you don't realise how much she's going to improve, and you try and envisage what life'll be like if she's going to be completely dependent, and where she would live, just how she could cope generally with life.

M

You're going to have to make changes. You know, that's one thing that's definite, you're going to have to do, like. And a lot of the changes you make, you just make the decision as you're going along.

F

If you're taking on a close relative who's had a stroke you have to be very, very certain in your own mind that that is what you want to do, that you want to bring them into your own home.

M

But the whole, your whole life does change. That's without a doubt like you know, and you've got to look at things. I think you've got to plan more in advance of what you're doing. You don't do things in a hurry.

F

You have to be very certain and have a reasonably good relationship to be able to cope with the attendant pressures, let's put it that way.

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Bill

Caring for someone after a stroke can take a lot of getting used to. Relationships can change. And always at the back of everyone's mind is the question how will I cope? Well one way is to look at a stroke maybe not as an ending, but maybe as a challenging new beginning.

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F

When I took my mother on, when she came to live with me, I had to make sure that it was possible to leave her during the day while I went to my full time job.

M

You've got to watch from your own perspective, from your own part of your life, that you don't give up everything that you're doing to entirely look after the person who's had the stroke. I think that's quite important, because you've got to try and keep your own identity.

F

Even a person of 95 who's had a stroke, depending on the severity of the stroke, it's ok to leave them. There's no problem with that.

F

Personally from my point of view, working has been very important because it's been – it's actually been something for me to sort of do for myself which might sound very odd, but if you like, when I'm at work, I'm in control and I've not felt in control of this situation at all, so you know, the natural reaction I think is that a lot of people'd think you'd give up work, but no.

Bill

Of course, in the first few weeks after a stroke, you'll need all the support you can get. But you'll be in good hands. In the first few days after a stroke, you'll be put through more tests than you ever knew existed. For example, your blood pressure'll be monitored, your blood'll be tested, your chest will be x-rayed, your brain will be scanned and your heart rhythm will be measured. All these tests are just really to identify the type of stroke you've had and the best way to deal with it.

M

I mean, I think I was lucky in going to the Western General. They were tremendous.

M

And I know now that I was heart … stroke… I'd had a … a stroke…

F

On the left side of your brain.

M

Yes, yes.

Bill

As well as doctors and nurses, you'll be meeting physiotherapists, occupational therapists, speech and language therapists. Now I know it may sound a bit daunting, but they're all there to help get you on the road to recovery.

F

Obviously if there's a good regime of rehabilitation, people can get over stroke really quite well.

M

Indeed just a few weeks ago, I was having bad trouble with my foot and I was told well you're going to have to walk on it, and then it'll stop, but it'll hurt more until it does. I thought great, but they were right, and I did. I just plucked up, gritted my teeth and got on with it, and it's cured itself, that bit anyway.

Bill

After a stroke, everyone wants to know the same thing – will I get better? Well, the honest answer is yes, you will get better, but how much better no-one can tell.

F

You have to take each day as it comes.

M

And things are still changing 11 months after the event. I'm still improving slightly.

M

One of my physiotherapists, Liz, I remember her saying, you know, that she'd seen people making progress after even five years, so I'm not even halfway there yet, so …

M

I'm beginning to walk a lot better than I did. In fact for a long time I wasn't walking at all. I was confined to a wheelchair. We don't use that any more.

M

And you sort of get – you sort of climb mountains and then you get to a plateau, and then you move up, and then you get to another plateau, you know, lots and lots of things where you sort of slow down and then you make a bit more progress.

F

And after a year you think oh we've came a long way you know. Things have changed in that year drastically.

M

But it's got to come from inside yourself, I think the therapists can only do so much.

Bill

Recovery from stroke is much faster in the first few weeks and then can slow down after that. Rehabilitation and therapies involved can help, as well as your own determination to be more independent. Now it's important that the carers understand that, and resist the temptation not to do everything for you. The golden rule for carers is never do for the person who's had the stroke what they can do for themselves. For carers, these early days are a time of adaption and the first stage is to come to terms with their new role.

F

It was quite strange at first because I wanted to help as much as I could, but I had to hold back, because I knew that I should let her do as much as she was able to.

F

And I also did a course to help Neil. I did a six week course on speech – his difficulty in speech, just exactly what his difficulties were with a speech therapist that helped me to help Neil. Because the worst thing you do is, and you do it unconsciously, is you step in before he has a chance to answer properly. Then he loses the thread of what he's been trying to say to you, and you have to start from scratch again. So to learn not to do that is quite difficult, and even yet, I still do it unconsciously.

M

You've really got to stand back and let them try and do things for themselves, because I think they want to get back into a normal way of life, and you've really got to stand back and do it.

Bill

Perhaps the most important new beginning is to learn to accept what's happened to you. Of course you're going to feel angry and frustrated, but you're entering a new phase in your life, and you'll begin to deal with it.

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F

And I think through time you accept that you're not as able as you were before the stroke, but that the future does hold hope.

M

Think positive. Things are never as bad as they seem. Takes a while to realise that, but you do eventually.

F

I think you just have to – it's just a matter of making up your mind you're going to do something and just do it. If you can't do it the first day or the second day, you do it the third day. You know, you just get on and do it.

M

And whatever age you are, you can make progress. You do not have to be the same as you are on the day you have your stroke.

M

To don't give up.

F

No. Don't give up.

M

Yes.

F

Keep trying.

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Bill

We've seen and heard how stroke families are learning to cope with the changes in their lives. But one last point to end on – never be afraid to ask for help. Whether it's from doctors and nurses, professionals like social workers and care managers, or support groups for stroke folk and carers. You are not alone. So make the most of those around you.

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