I think the, when I look back to my time in hospital the, the medical, the medical discipline, the medical profession which I had never really understood the full and complete worth of before, but now realise absolutely what they do and how well they do it and to what effect it is physiotherapy. I’ve been very fortunate but I doubt I’ve been unduly fortunate to have some very good physios and I think the standard of physiotherapy in this country from my experience is extremely high. I’ve had so many different physios because they rotate round often in different hospitals and, I have never met a bad physiotherapist. I’ve only met caring, supportive, intelligent, knowledgeable physios right through. And I’ve also had one extra advantage that since leaving hospital, my last rehabilitation unit, when I didn’t have the, any ability to walk, I didn’t really have much use in my left leg, I have been guided by a final physio who has treated me privately at home. Now that I realise is, because not everybody has private health insurance, that is an enormous advantage which I’ve had over perhaps the majority of people but I’ve shared with virtually everybody going through the NHS, the enormous quality of physiotherapy that exists in this country. And, they are, they’re a great bunch of, of people. And they, they quite rightly keep you up to the mark, they don’t let you slack, they, they always explain to you what they are doing and why they are doing it and what they hope will be your benefit from things. So, I think, both in temperament and in their whole attitude to their work and their knowledge of their work, I’d put them as overwhelmingly top of the tree.

WifeAnd then he got moved to a rehabilitating hospital for supposed to be physio, you know, he was to get there to bring him on. But when he went down there after a week, as I said, they said that he would never ever walk, he would never be able to stand and I should put him in a home because I would never manage him, it was too much work. But I kept saying, you know, I never gave up hope, I kept saying I didn’t believe them, you know, and I still hoped that he would be able to get better and I phoned two private physios who were angry that he wasn’t getting physio. They said he must get physio for a stroke but they wouldn’t give him it so and I couldn’t get home because he had a big wheelchair.

And I had carers coming in at first, you know, they came in and our own doctor came in to see [my husband] and I asked him if it was possible he could get a physio to come to assess [my husband] and he got up and tested [my husband] and he was amazed at how much power he had in his left hand and left leg, so he said, ‘Oh yes, I’ll definitely get a physio’ so we got a physio from one of the hospitals in [the city] and, as I say, the second week she was here, she had you standing, she brought a zimmer in and

HusbandYeah. I mind of that now.

Wife’got him standing and then she got him walking. He was able to walk through to the bedroom. She even walked him outside along to the next close and back and then she was, she was like God to us, she was absolutely marvellous.

Is there anything else that you want to get across to other people from your experiences that – either to other people going through it or to doctors and nurses – that you think they ought to know about?

Stella’ I wish there would have been some assistance with mobility. I would like to have had more exercises to my legs, if possible.

Deborah’ Mum found it a bit hard that the physios – in the hospital they were excellent especially on level 5. On level 4 it had been knocked down a bit, because–

Stella’ I think it had been neglected.

Deborah’ They realised that there wasn’t as much movement as they had hoped for. Here there’s very little, apart from the exercises as Mum had said earlier.And I think Mum misses the exercises.I mean obviously the left side won’t work because now deterioration in the muscles has occurred, and now more in the right leg as well. I think even if they do feel that the patient is unable to do things, I think it would be nice for the patient, if the patient is enthusiastic.

Stella’ To have an idea that you can have a try.

Deborah’ Yes, to just try and – even if it’s the big toe or just moving the foot round, just any kind of encouragement to keep the body fit.

So it’s that, all that sort of rehabilitation stuff?

Deborah’ Yes.

Stella’ Yes.

Sort of initially okay, but then maybe dropped off a bit?

Deborah’ Yes, because they realised that Mum’s mobility wasn’t……

Stella’ There’s no hope.

Deborah’ Yes. We did have a problem in the hospital because of Mum,because they were trying – Mum had a pacemaker fixed while she was in the hospital, because Mum would have spells of passing out every time they tried to get Mum standing up. So of course then obviously physio was slowed down a bit. But physio can still be used when a patient is lying in bed, or even in the chair with the arm, but it’s like they get to a certain point and they feel that the patient can’t do that.

Stella’ You can’t go on any more.

Deborah’ So then they don’t follow it through. And it would be quite nice if they did just carry on doing some kind of physio. You’ve really missed not doing any of the physio, haven’t you?

Stella’ I have, yes. Yes.

When you said, There’s no hop, it’s like it’s not just doing it that you miss, but also it’s a signal that, if they don’t give it to you, that…?

Stella’ That I can’t even try.

Then I think on, I think it was a Friday, I said to my husband. [Husband’s name], I’ve got to get out of here. I, Please get me some physio. I don’t care how much you have to pay privately and if the health service can give it to me fine. I have got to get some physio. I have got to get out of here And being the sweetheart he is, he went to speak to the staff nurse. And he pulled a few stings and got a physio out there and with a helper that afternoon. I don’t know how I got out of bed. I just had no energy at all. [laughs] But they helped me to sit on a chair. Literally sat down a couple of minutes talking to me. I think I might’ve moved a couple of steps. And I said, I’m sorry I’ve got to get back to bed now I was so weak. But they said they’d come again the next day. And they brought a Zimmer frame the next day. I thought, Oh what, how hilarious you know tell my friends I’m on a Zimmer frame at my age [Laughs]. But I couldn’t use it because one arm was completely lifeless and you need to hold Zimmer frame with two hands. And therefore I couldn’t use it. So I had a person each side of me and they moved me six steps in a circle, sat me in a chair again. And I sat there for fifteen minutes the second day. And I said Please can you put me back to bed which they did. And all during this time believe it or not, because I’ve got bad knees and I was told to build the muscles up in my legs. I’d been doing leg exercises, raising my legs, even though I was in bed with a stroke, I’d been pulling my nightie and doing this. Doing the leg exercise with my one good hand and doing both legs like that to try and make sure that my knees didn’t seize up from the arthritis. And the staff nurse had seen me doing this and seen me trying to help myself and so he fast tracked me to rehab.

On the ward, I can remember I went into the gym at first, she asked me, the lady asked me, ‘What do you want? Do you want your arm back or what do you want to work on first, your arm or your leg?’ I said, ‘Get me walking, get me walking, you know, that was my main thing. In hindsight now, I would have said both. Get me, work on both, but time is limited, their time is limited down there obviously, they’re very busy and I think that’s why they asked me and I’m not saying if I’d worked on the arm more and I got the arm back but I, it’s hard to explain and, and I thought I would lose the leg more than lose the arm, you know, I had to have walking but the arm will come no more, you know. But get me walking. The arm’s not important. I’ve got another arm here. But on hindsight now, it’s very important. The left arm is very important to me because of how much I miss it, you know.

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 theres 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. Shed 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 elses.

You also mentioned that you’d seen an occupational therapist. Can you tell me about the things that you were doing with the occupational therapist?

Yes. He had plastic plasticine and I was working with that because the first time he came out my fingers were all curled up and I wasn’t aware of my fingers being like that but then probably I was that ill and I just didn’t know but gradually he, I managed to straighten them out and he was helping with these things and I think he had different kind of like children’s toys it was more or less, you know [laughter] using that things, things like Lego, some things like that I think it was, you know, simple things but they did help that. Now, I graduated from that to the physiotherapy.

Some people find that they get annoyed having to do perhaps silly things with children’s toys. How did you find doing that?

Well, I realised it was helping me, so I didn’t mind. I thought it was just elementary but it was helping me, so I had to start from scratch [laughter].

I went in the afternoon and that was putting nuts on to bolts, putting oh, they had a lot of, a lot of different things that they had and you had to put square things into, into square holes and round and I couldn’t do it at first. There was no way. I couldn’t pick them up. That was the problem, you see. It’s catching something. You hadn’t the feeling in your hand that you could catch a wee peg the proper way if they were lying flat. To try and catch them and lift them and put them into the holes, it was so terrible difficult. But’

Did you mind having to do that?

No. I didn’t mind at all. Not, not a bit of it because I knew that this was part, part of the game that if, if you kept at that, you would be able to do it if you wanted to do it but if you, if you didn’t want to do it, you were wasting their time and yours. You had to work at it because I know some of them there that you know, they sort of gave up and I was determined. Theres no way was I going to give up and I just worked at it with them and the girls were marvellous and they would come for you every afternoon and you would have a, you’d have an hour with them and different things you had to do, you know but I remember the bolts and nuts, you see, and that was for you pick up all the nuts and screw it on, screw it on, on to the bolt. And washers and things like that I found difficult. Eventually got better and got better and got better and then in the end of the day, they just said, ‘I think you can go home.

The physiotherapy at the rehab unit was absolutely brilliant. Every morning we were, we got up, we were washed and dressed and put in our chairs and wheeled through to the gym and they had a very nice compact little gym there. You were, because you couldn’t walk, so, and you had, you, when you’ve had your stroke, you’ve lost your sense of balance completely and so they had beds that they could lower and they could raise them and there was a huge mirror, a big full length mirror and so we had to sit on the bed, on the edge of the bed so, I mean, again, you had to learn how to actually sit on the edge of the bed and you faced the mirror and then they hold you up, theres a nurse either side and you stand up in front of the mirror and you have to find your central point’

Because when you’re normal, you’ve got complete balance, you know, you don’t wobble around, you just walk, you’re completely normal. But after a stroke, you, you’ve got no sense, you’ve got no balance, you’ve got no central point, so you have to learn how to stand up and see where the sort of central point is. You’ve got to get your balance somehow and you’ve got to learn how to do that and it’s really difficult when only one good leg, you can feel one leg, you can’t feel the other one, so you have to look down and make sure that foot is level. So you’re standing on two feet equally, you can see that in the mirror, so you have to watch what you’re doing. And so you learn to do that and you learn, it takes a long time but you learn to stand without actually wobbling all over the place and so you then stand with one person at the side of you and then you learn to stand on your own and you’ve actually, you’re actually standing there without wobbling in front of the mirror, looking at yourself and that’s really great.

And they, and you know, it’s all sort of, you go through all the stages and then you have to, they have a long sort of walkway and it’s got rails on either side and you can hang on to the rails and you have to learn how to put one foot in front of the other. A long, a very long process. You work, gradually you work up to being able to go up this walkway, which is about, oh about 15 feet long I should think with these big rails on either side and it sort of it’s a sort of shiny sort of wooden floor and you just learn gradually to take one foot in front of the other and then one day you’re actually able to get right up this, the length of this walkway. But then of course, you’ve got support, so when you come away from there, it’s another thing to actually walk on, you can’t, you can’t walk on your own. You can’t imagine really how it is not to be able to walk. You can stand but you can’t walk and so you have to learn with one person either side of you to walk all over again and it’s quite amazing when you take your first step. It’s just absolutely thrilling to think you’ve made one step, it sounds ridiculous but I’m sure everybody that has been through all this will understand exactly what I’m saying and then you take your first steps, you take a little walk and I can remember. It was my party piece when all my friends used to come to visit when I was first able to take a few steps on my own.

And the other medication I’ve started recently is botox. I’m not quite sure how common that is but the problem I have with my leg is that the knee don’t, don’t, I haven’t got full movement in my knee, so I can’t get my leg straight and it’s partly because of the, the ham strings are just like locked solid all the time and I can’t relax them. So I went down to the clinic that does this botox treatment and the consultant there just injects botox in the back of my leg into my hamstrings really to just try and paralyse them and knock them off and relax them, so my knee will have better movement and try and get my foot to reach the floor, so I can attempt to try and weight bear on it. And it hasn’t helped from a mobility point of view but what it has done is made sleeping a lot better for me in terms of being comfortable because whereas this leg would just be like a solid post in bed and I couldn’t bend it and couldn’t get comfortable, at least now it’s more, a bit more supple, so at least I can get comfortable better now.

And what’s it like having the botox injections?

I don’t feel it because I’ve still got so little feeling in my leg, I didn’t even know when he puts the needles in’ And I think the botox lasts for about 2 months, so I think I go down, I’ve been twice 2 now, once for every period because I went the first time and went a couple of weeks ago just to have a top-up. So I guess I’ll have another appointment in another 2 months now. But it certainly makes things a bit more comfortable and hopefully, I mean, he seems optimistic that it, that we could get some benefit from it, which is nice, because hes the only person, health care professional that I’ve seen that’s said anything other than I’m going to die. So that’s quite nice really that he actually says hopefully well get some benefit because he says hopefully he can get me to weight bear on that leg, I might be able to do, as he puts, some meaningful standing, maybe able to stand up in the bathroom to shave or something hopefully in time, which sounds like almost like a dream really. That would be great if I could do that, so I’m not, hopefully hell be right but I’m not pinning all my hopes on it because I don’t set myself up for disappointment but hopefully it will work.

How was it, that first time when you actually stood up and walked?

Oh, wonderful. you know, you , it’s a lovely feeling, not as good as, as moving my big toe. That was the, that was the main thing. I could actually move, get some move back standing up yes, standing up was good. I then had to just stand for about 5 minutes with somebody behind holding, all ready in case I fell and then the first steps. The first steps were done with parallel bars with somebody in front of me and the first walking up and down steps, they have, they have simulated steps in the gym, take them one at a time. First of all, you take one step, you put the good leg on the step first and then the bad leg goes on afterwards and then the good leg goes up one, the bad leg goes up one and so on.

Because that was another thing in, towards the end of rehab, you had to learn how to walk up stairs and they had a little staircase in this unit because everything was flat obviously so everybody could move around easily, so this little staircase right at the other end and so we used, we used to have to take it turns to go and you had to learn how to walk up the steps first of all and so they said that, ‘Try and think about it as if you’re going up to heaven. If you’re going to heaven, you would put your good foot first. So you put your, your good leg first on the first step, then you lift your stroke leg next, get to the top of the stairs and turn round and then come down. Imagine you’re going down to hell, so you would put your bad foot down first, put that down and then you’d gradually learn. Coming down stairs was much more difficult than going upstairs. Well, I thought it was anyway. It seemed, you know, you’re looking down at this and you didn’t think you could do it but going up somehow seemed a bit easier because you’d sort of pull yourself up somehow but going down was not so good and so you had to learn all that.

And how is your walking now?

HusbandWalking, I’ walking road slowly, slowly.

So you can walk?

HusbandYes.

In the house?

HusbandYeah. Library. Library’ Walk.

WifeAround 20 minutes he can walk round.

And do you use a stick at all?

HusbandYes. Yeah. Stick. Yes. Yes.

And what’s good about the stick?

HusbandBalance. Balance stick.

WifeConfidence.

HusbandConfident.

WifeWithout, without stick he is’ you know, stumbles sometimes. But with stick, he is more confident.

HusbandHouse stick not’ me walking sticks.

WifeOutside of, you know, he need it more. It’s like glasses nowadays, you know, it’s very important for him. One day he will forgot to take the stick and he was so upset. We went to Switzerland to see my family and he was so upset. We forgot, early morning flight, it was early morning, 5 o’clock or something, so we left the stick at home. It was so, he was so upset, then my brother bought it, stick over there and after that he become calmed down. It’s like glasses, you know, it’s like one of the part, one part of his, part is like that, you know. It’s very important.

So you use the wheelchair now. How have you found having to use the wheelchair?

This chair is a Godsend. Well, I got one from the NHS. That’s’ good and then I got this one from my sister and my brother in law. It was his mother’s and she died and it was just sitting in the garage, so they said, ‘Look sooner lying there, could you use it?’, so I got this one and just, as I say, it’s great for, well, manoeuvring you see around the place here and if I want, I just go away out and go for a run round the village and I go out, I work in the garage on my plants and stuff like that. Independence it gives you.

Tell me about the physiotherapy. Presumably you had to get walking again?

Ah, yeah. There was a, there was a, there is a gym at the hospital. At the start because I couldn’t move at all. They had a, I remember they have a series of numbers, zero for no movement at all and up to about 5 for relatively good moving. When I, when I first went to have my first physiotherapy, it was zero, zero all the way through and you were encouraged first of all to shuffle in and out, shuffle about in a chair, you’re then, you, gradually more and more, you lay on, they put you on your back and you have to move your, your legs sideways, two legs together. You then have to move your feet and so on and gradually increase the movement according to how much mobility you had and again, this is a good way of doing it because you say, they say, ‘Oh you had a, you had a zero last week, you’ve got a 1 this week, well done. You know, and you, you’re encouraged. You also, they also give you an aim, a goal. They say, ‘Well, do you have a goal in mind? What do you want to be able to do in the next week? What do you want to be able to do in the next fortnight? What do you want to be able to do in the next month?’ And you, you’re encouraged to say, ‘Well, I would like to be able to stand up in the next week’ for example and if you can stand up, then it’s rounds of applause all round, you know, and it’s a very good method of making you, making sure you, forcing you to improve. Making you do this sort of thing.

How do you, do you have any way of keeping a record of your progress at all? You were saying that, you know, you can look back and see how you’ve moved on, how, how have you recorded that?

I try and record in a diary what I’m doing and what I’m up to at any particular moment. And at one stage I used to time myself going around the park and seeing whether I could increase the speed, in fact, I’ve stopped doing that now because it isn’t a matter of speed so much as technique. Because now I, you know, I probably shouldn’t do it too fast, I should simply do it more accurately and more proficiently. But yes, I mean, I would advise people to keep a good record of their own as to where they’ve got to and where they’ve from arrived at any one moment. For one thing it’ll do them the power of good to be able to set a marker on where they are now and then become increasingly aware of how they’ve travelled from one marker to another to another again. And by projecting that marker forward you can become more and more confident that one day you will reach the very same distance forward to the distance that you arrived from a point behind.

I had a chart on the wall that said like one, two, three, four, five, six, stages that I had to achieve before I could go home so that was a good landmark. It was like feeding unaided, walking unaided, things like that. I don’t know which order they were in or whatever. It also said that if I fell out of bed they had to have a hoist to lift me. And I’m afraid I still have a weight problem. But going down this list really (helped) and yes I can do that, yes I can do that. That was good, that list on the wall. I don’t think it was meant for me, I think it was meant for the nurses. So having little markers to achieve helped.

You talked earlier about sort of building up the distance that you took the dog for a walk. Can you tell me about that again?

Yeah. Well, to start with, I took him, well, from here to the bottom of the brae and back would be maybe about 100 yards and I was struggling with that. Then I just gradually increased it because I took him out down to the shop, along to the next road and back up that way. And I took him that way for about a week, then I took him the other way, the opposite way, when I went to the bottom, went down to the shop, and went the opposite way and I just gradually increased the, the distance I went with him until I’m, until I was going further, even further, just kept increasing the distance all the time and then the dog got kind of worse, so hes got as bad as I was now, so I’ve slowed down the walks. I’m still taking him plenty walks but just shorter ones.

Do you think Hamish has been important in, in helping you recover?

Yeah. An awful lot.

What’s important about having, having the dog?

The fact that I know hes got to get out and I don’t let a dog out on its own because it, to me, it’s not right to let a dog out on its own. If you’ve got a dog, you’re, you’re responsible for it, therefore you should care for it and that means taking it out and going out with it. Therefore, I mean, I’ve got to go out with him which has encouraged me to get up and go. Whereas if I didn’t have him, I wouldn’t go out near so much and I wouldn’t go near so far.