Ann’But he does like to be on his feet and he does like to stretch his leg, his legs. I think the one – yes, you bought that a year, didn’t you? A year after you were, started to deteriorate, yes. And that’s been just wonderful. But the one thing that he has kept doing, and we think has helped Peter, is that he used to go to the gym a lot, and he still goes to the gym. He goes to the gym twice a week and has a personal trainer, who stretches his legs and his muscles, makes him do lifts. His, his upper body strength has been kept up to speed, which means that when he does fall he can help himself to get up, which is wonderful, because I can’t lift him.

Ann'[laughs] But together we can do it, together we can do it. So he goes to the gym twice a week for a trainer. He also goes on his own, and walks on the treadmill – very, very slowly, but that keeps his legs moving. And he sees a physical therapist once a month who gives him a nice massage, which he thinks is wonderful. And she’s blonde as well, so that helps [laughs]. [Peter’writing].

I guess with those walking, the treadmills, you can, you’ve got something to hold on to, haven’t you?

Peter’Yeah.

Ann’Mmm.

So actually they’re ideal in that way.

Ann’Yes. But as you say [reading], I mean unfortunately you have to pay for all this yourself. And if something like this could perhaps be on offer a little more for other people.

Peter’And, and we — [Writing].

Ann’Well, I know we pay a lot of money. I don’t think we need to go there [laughs]. We do pay a lot of money. But that’s fine because we can, you know, that’s what we can do. But unfortunately there are people who can’t, and if things were, you know, were on offer like that. Also a hydrotherapy pool would be wonderful, if there was one that he could use. But we’ve discovered that the nearest is [city] and that would be’

So do you go swimming? Can you?

Peter’No.

Ann’When we go on holiday he can – no, he did used to go swimming. There is actually a, a heated pool at the local handicapped school, isn’t there? school for handicapped children. But he, there was no help there, and he nearly drowned twice. [Peter’laughs]. So we decided that probably wasn’t the best thing. And it did put you off a little, didn’t it?

Peter’Yeah.

Ann’But when we go on holiday, we – we tend now to go back to the same places because we, familiarity is very helpful. And there is the pool in Florida, when we go over to Florida, that he can actually go in and he can do his leg lifts and he can do some exercises in there. And because it’s in the water it’s much better for him.

Peter’Yeah.

Ann’So, so that’s, that’s good.

Exercise is clearly something that’s been very important in your life anyway.

It has. And in fact I was on the website the other day, and it was sort of pros and cons of exercising. Well, I’m not interested in that. It’s like, it’s like reading the newspaper every day and them saying, ‘Red wine’s good for you’ and the next day they say, ‘It’s bad for you. Or, you know, ‘You shouldn’t eat this and you shouldn’t eat that. If you did everything that anyone told you, you’d never do anything. You know, you’d be terrified to go out the door, you’d be terrified to eat anything, you’d waste away. So people telling me what I can and can’t do is just, just pointless. My neurophysio said, ‘You mustn’t go to the gym more than three, more than twice a week. Well, how does she know I shouldn’t go to the gym more than twice a week? She’s not me. She doesn’t know how I feel. And in fact I was going to the gym three times a week. And when I was away I went four times. So since I’ve been back I’ve been going four times [laughs]. And of course you get tired. But you get tired when you’re 55 anyway. So, you know, you, you have, it’s all relative, you have to put everything into perspective. And if, if I can manage to do all these things and, and not make myself ill, then that’s what I’ll manage. Some days I feel quite rough and so I won’t do anything, and I’ll just sit around and feel sorry for myself – no, actually I don’t do that [laughs] – just sort of sit in my office or something. But I, I never have a day where I don’t do anything. In fact to be truthful, the most depressing period was before I knew what was the matter with me. Because all the time you’re not, you have no idea what’s the matter with you, but you’ve got this condition that’s getting worse and worse, it is extremely depressing. I have a friend at the gym whose husband has a similar sort of condition to me. And he’s been even up to [specialist hospital] and he’s been told he’s got some sort of peripheral neuropathy, but he hasn’t been given a, an MND diagnosis. And his condition is deteriorating – not to the extent mine has, he can still walk about – but he trips over and his ankle is very weak and so on. But I think he finds it depressing because he doesn’t know what’s the matter with him, and they haven’t, you know, they haven’t made a definitive diagnosis, really. And I think he finds it very depressing. And I was much more depressed in that period of eighteen months than once I’d found out what was the matter with me. And in fact I used to sort of sit on the sofa of an afternoon and have a, a half-hour or a forty-five minute nap, whereas I don’t do that any more. Because now I know what’s the matter with me, I know what I’m up against. And it, it’s almost a case of, ‘I’m not going to get, let this bugger get me. I’m going to fight it all the way. And I, if there’s something that I think might be a progression, I’ll just push it to one side and just get on with it.

I had three one-week spells of treatment with intravenous immunoglobulin, which meant hospitalisation for a week. Now one thing that I hadn’t anticipated about this particular condition is that if you don’t use your muscles much, perhaps even more for, for most people, then you tend to lose the ability to use them. And on all three occasions what I found was that, after being effectively in bed for the better part of a week, there were things that I could no longer do as well when I came out. In fact after each of those three occasions I very rapidly had an accident immediately afterwards. So for example getting out of the settee, toppling forward and breaking a toe for example. Or spraining an ankle within a few days of leaving hospital. So I think that’s something one does have to watch out for. In my particular case it wasn’t helped by problems with one of the syringe drivers, which meant that I spent probably more time in bed and less, less time sort of walking around or going to the loo or things of that sort, simply because it had to be reset every time I, I left the bed. So it’s, it’s worth watching out for that and warning staff, hospital staff that this can be a problem. Because I, I don’t think they realise that it could be.

You actually need to keep moving while you’re there?

That’s right.

And when you got home did you just, how did you build up your strength again?

Just by being active, as active as I could. But the thing about MND is that it’s very difficult to recover an ability to do something once you’ve lost it, simply because the muscles are actually losing their connections.

Have you ever had any access to any physiotherapy?

Yes, yes, the physiotherapy that I, in fact one of the things again perhaps worth commenting on, at an early stage of the diagnosis process, before it was realised what it, what I’d actually got, we were still thinking of peripheral neuropathy. After some initial physiotherapy at the local community hospital I was actually given a pass to the local leisure centre, where they had, you know, the gym, and was encouraged to use that. With the benefit of hindsight that wasn’t a terribly successful approach. Of course, because one of the things, the best way of managing MND is to avoid getting overtired. So really encouraging one to pedal furiously on an exercise machine or something of that sort really wasn’t doing any good at all, and in fact was simply reducing the amount of energy I had for sort of everyday essentials.

And after you were diagnosed did you keep, did you have any physiotherapy?

The physiotherapy that I’ve had since diagnosis has been mainly concerned with maintaining the flexibility of joints. You can’t really build up muscles as such. The main thing is to try and keep things working for as long as possible. So things, well, very simple exercises, I mean that you can do in a wheelchair if you reach that point for example. But certainly not anything involving very hard work.

Edited text prepared by Peter
I do think that my illness has slowed down. Perhaps it’s just me or maybe it’s just my type of MND, but it does seem to me that what I have done for myself has helped to slow it down, and that therefore doing nothing is not an option. If a patient is allowed to go home with a feeling of helplessness and hopelessness and gets depression as a result, and he or she becomes worried about what’s going to happen to them, this puts the patient in a psychologically very bad condition. In such circumstances, any illness, especially a neurological illness, is likely to advance quicker than if the patient is in a much more positive, optimistic and upbeat mood. Consequently I do think that alternatives to doing nothing should be offered, for example, vitamins to take to strengthen the body’s immune system, physiotherapy to help the muscles that have not wasted away, and taking part in research into the disease. There is talk about stem cell research and other research and so on, which at the moment is not practical for use on humans, but I’m sure that if patients with MND and other neurological illnesses were given [name] the chance to contribute towards future cures at least some of them would be keen to do so rather than sit and wait their turn to die. As an example of something completely ineffectual, I was offered 10 hourly sessions of massage in a local hospital, which turned out to be around 40 or 50 minutes of relaxing massage which did nothing for me and was a total waste of everyone’s time.

It is evident that proper physiotherapy on a regular basis is necessary to defend the muscles that are still able or capable of some movement, and to keep muscle tone. As a result of physiotherapy taken five days a week (unfortunately I have to do it privately as there are no facilities on the NHS) I haven’t lost much muscle tone. I’ve only noticed some muscle wastage in my upper arms and in my shoulders, but elsewhere my muscles seem generally to be holding up. A word of caution, though. My version of MND appears to be of the slowly progressing variety, and other forms of the disease which are quicker in their effects may make my suggestions less useful.

Tell me a bit about the physio. Because I think you said you arranged that yourself?

Yes. If I may say so, it’s obvious that the NHS hasn’t the money to employ physiotherapists on people who can be described as terminally or chronically ill. So I had to go privately. I have a Polish person who comes five days a week. He worked in a sanatorium in Poland. He comes five days a week to exercise my arms and legs and various parts of the body, and also to give me therapeutic massage.

Have you seen any physiotherapist?

I have. I’m a bit angry really I wasn’t referred to a physiotherapist as soon as I was diagnosed. Because it was only a fellow colleague of mine who was a physiotherapist that said why haven’t I been referred and I should be seen. And by that time my muscles were very tight and my tendons were very shortened. And with physio and exercises that could have been stopped or slowed down.

The problem with physiotherapy is people sort of, whove been diagnosed with illnesses such as mine graft onto it thinking it’s going to actually slow the progression down or help them to, you know, stop the illness but of course it doesn’t. All you’re doing is stopping secondary problems from happening. But my family do my physio with me at least every other day and if they can manage it they do it every other day, every day. And as I say it stops all the contractions or stops the pain. So yes I find physio invaluable but I wish I’d been diagnosed, referred earlier.

Right from the point of diagnosis. When was it you actually got?

I started receiving physio about April time, so about seven months after diagnosis and because of the way I walked it had shortened the tendons and all my calf muscles were very tight. And also my feet were very swollen with blood blisters on them. But through physio my feet are now the normal size and I don’t get the blood blisters and they’re the normal colour again.

Ok. I also wanted to ask you about the different services that you’ve been. You’ve mentioned the physiotherapy and the speech therapist. Did it feel as if those services were working together and did it feel co-ordinated?

No. I’m going to think particularly in the first instance of physiotherapy. I think I’ve already said that in the early days in August of 2005 the hospital who did give Teresa some physiotherapy, chest physiotherapy indicated that they would like to see Teresa having chest physiotherapy in the community two, three, maybe four times a week initially but as a long term objective two or three times a week.

When conversations took place with occupational therapy they seemed to be unsure whether a community physiotherapy [corrected by interviewee] actually existed. There seemed to be a feeling that if that type of intensive physiotherapy was required to be done in the community then it would be a hospital based physiotherapist who would come out and perform the physiotherapy. Occupational therapists seemed to think that that sort of physiotherapy was outside of their remit. The problem was circumvented partially by the hospital physiotherapists, having referred to their seniors, educated me and instructed me on how to perform the necessary procedures and use the suction machines. The portable suction machines and the oxygen and all the rest of it. If there is a problem in the community for physiotherapy then the option of training a family member or carer is one that should be considered, looked at, perhaps at an earlier stage.

A hospital physiotherapist is a very busy person. They spent a lot of time more than one of them, spent a lot of time with Teresa. They were very patient with me and helped me. But some of the techniques are not techniques that are learnt in five minutes. The technique I could have done with a lot more time to practice and perfect under supervision within the hospital, they did not always have the time to do it. One or two physiotherapists came back after, when their duty had finished in their own time to give me time. I think that’s absolutely splendid but it should not be necessary. If we need to train people in families, if we need to train carers, then it needs to be recognised early enough and resources given to it. Or we need to ensure that the coverage for physiotherapy within the community is adequate.

And it was quite interesting on that front, because she started complaining probably in about early November, late October when we had moved her downstairs, and she had the mechanical bed, she started complaining of very sore legs and they were waking, she was waking because her legs were sore, they were hurting. And so, even though she was using the leg lift part of the bed with her remote control, and we talked to the physios about this and they said, ‘Well, you know, we’ll just do the physio exercises. And the physios were coming probably on average once a fortnight, and it really wasn’t enough and so we were doing physio, and I actually ended up doing physio with her three times a day. Once when she got up and got through her breakfast, once after her lunch and once in the evening before she went to bed. And the leg thing was really very simple. It was the hamstrings, it was really, I mean I’m not a physio, I worked out it was the hamstrings. So we did hamstring exercises twice a day, and the leg problem disappeared. But nobody told us that, we worked it out for ourselves. And I think that’s another lesson that we would have is that you’ve just got to keep your head together and keep thinking because you can work out how to overcome a lot of the problems, much more easily than people who, are not familiar with the situation with the circumstances of this particular disease, in particular this one it’s so rare it’s unlikely in their professional lives they’ll ever come across it again. But who really are applying standard remedies to things that don’t need standard remedies. You really need to sit down and think what the problem is, and then try and find a tailored solution to it, and so that’s what my wife and I were doing all the way through.

And that actually gave her a comfortable existence. We started being able to sleep all the through the night again because obviously we had a two-way radio system that Olivia could call us if she was uncomfortable. So we used to be waking up two oclock, three oclock in the morning, coming down, turning her over, sorting her out and going back to bed again.