Yep. So I had lung-capacity testing a few months ago, and that was to check that I could fly. It was also to check my lung capacity because they wanted to, my neurologist had advised me that it might be worth thinking about getting a PEG inserted. And she’d explained why, and that it was really to, so it was there to be used if and when I needed to. And if I didn’t want it in the future I could have it taken out. But once my lung capacity got too low they wouldn’t be able to do the procedure, and that takes your choice away. So I haven’t made a choice as to whether I want to use the PEG or not. What I have made the choice is, I want to have that choice later down, later on and further down the track. The procedure was fine. It was very easy. The hardest thing for them was trying to find my veins, because they’re just absolutely thin as anything. But the procedure only took about ten minutes, and that was all fine. It was quite painful for a couple of weeks afterwards, very, very sore, and it was difficult to laugh, to cough and to move. You know, it does affect a lot of muscles. But that was only for a couple of weeks and now it’s fine. It doesn’t really affect me. And I’ve been talking to my dietitian about getting a, a flat PEG which doesn’t have a tube routinely. So that it’s just literally sitting there flush against your skin and doesn’t show through your clothes. So I’m going to get that done in a month or sos time.

Have you ever used it at all?

No. We, I have to flush it every day just to keep it clean, but, no, and I’m – no. It’s just – I tell people it’s just, just an accessory, it’s just for show at the moment [laughs]. But I’m looking forward to getting that tube, you know, cut down and just, you know, not having that. It was a bit of a, it was upsetting to first see it and get over that. But that took a couple of days, and it really wasn’t a big deal. You, with this illness you, you adapt and you move on, you know, and just as you’ve mounted the next challenge there’s another one that comes along. So, you know, you just, you just do.

You’ve got a PEG, I think you said, but you’re still eating and drinking normally as well?

Yeah. I had it put in in March, because I was losing weight slightly. But because I’m not heavy anyway, losing half a stone to me was a lot of weight. And then I was, I take build-up drinks to get, that’s kind of kept my weight stable. But there’s a lot of evidence that if you have the PEG tube done early, rather than when it’s absolutely necessary, the recovery is better, and life expectancy. So I agreed to have it put in just – way before I needed it for feeding – so that it was there if ever there was a problem, rather than having a drastic weight loss.

So do you use it at all at the moment, or?

Not at all, no.

It’s just there waiting?

It’s just there, yes.

And did, have you had any problems with recovery or infections or anything?

I’ve had two infections, and it took a long time for the wound to heal. And those are things that I didn’t expect. I thought it would be in and over and – but it took more looking after than I originally thought. And luckily I’ve got an extremely close friend who – and they wouldn’t let me out of hospital unless two people could look after it, and I didn’t want the children to feel that the main – and she calls every day, and turns and cleans it, washes it out. And now, if she can’t come, my daughter does it. But on the whole it’s my friend. And I’ve got another friend, so that if I’ve got to have a break she’s on hand to do it. When I had a, a holiday in the Lakes I took my other friend with me because she can do it. So that gave the one at home a break. And, but I, my theory wasn’t just – if I’m not going to need it for feeding get it put in and that’s the end of it. I didn’t realise that there was an ongoing care.

Do, do you regret having it done?

I did regret having it done in the first six months, because it kept flaring up and I think, well, I’ve had lots of problems with it. But now I kind of hardly know it’s there. But now I have to actually – the PEG itself only lasts eighteen months, so I’ll have to have another one put in. Which I had, didn’t know at the time. And I think I may have waited a little bit longer, had I realised that that was the shelf-life, really, of a PEG. So I’ll have to go and have another one put in.

Footnote’PEG tubes can last much longer than 18 months, and there is no need to replace the tube if it is still working well. Each person must be individually assessed to check whether a replacement is needed and when.

The other experience that we had was when he had his PEG tube fitted last December. The decision was taken that he would, he would have it done. Mike made that decision himself, to have it done at that time, and it was set up pretty quickly really for him to go in to get it done. And the words were -and the speech and language therapist would, would support me on this one – she has changed the way that she speaks to people now as a result of our experience, because she said to us, didn’t she, ‘It’s nothing. It’s just a quick process, procedure. You’ll be in and out. Don’t worry about it. No problem, you’ll be fine. They’ll take you in the night before’ – which they did – ‘and then they’ll ambulance you across to the main hospital, and everything will be fine. And that was great. So we were pretty confident, weren’t we, that that was okay. So I went with Mike down to the waiting area before they wheeled him in to do the procedure. And of course Mike kept writing on his board, ‘Remember to tell them that I’ve got motor neurone. And I said, ‘I have told them. I have. And then they came and explained what they were, what was going to happen. They were going to put this tube, you know, down and out through his stomach. Fine. And Mike kept saying, ‘They do know I’ve got motor neurone? And they do know that it’s affected all this area?’ [indicating face and mouth]. I said, ‘I’ve told them. Anyway the consultant came up to me and he said, ‘We’re going to take him in now. And I said, ‘That’s fine. And he was fine about it.

Of course they got him in, and they couldn’t get it down, because all the muscles, they don’t know what was going on inside. He couldn’t take it because the muscles couldn’t, he couldn’t swallow it, you see, he couldn’t react to this tube going down. And it, they just couldn’t get it down at all. And of course they have a plastic piece that they put in the mouth to put the tube and the camera, apparently, down the throat. This is what we were told.

And it was on his lip. Well of course Mike can’t speak. And what they did when they – they tried about three or four times to get it down. And I could hear what was going on in the room, and I actually thought that they were killing him. He was in such – you couldn’t, you couldn’t hear him shouting because he can’t speak, but you could hear him moaning. And I wondered what the hell was going on. And, and all of a sudden it went really quiet. And the consultant came out, and I remember looking at his face thinking, ‘They’ve killed him’ [laughs]. And I said, ‘What’s gone on?’ He said, ‘We’ve got a big, we’ve got a problem. I said, ‘What’s, what’s the problem? What’s happened?’ And he said, ‘He just can’t take the tube. He won’t, I can’t get it to go down. And he’s fighting it,’ because he couldn’t get it down, you know, and that. And when he came out of – they brought him out of the ward, out of that room, back onto the, into the waiting area to decide what they were going to do next. And what they’d done is rip the thing off his lip, you see. It was stuck on his lip and Mike couldn’t tell them. So they ripped it off. And of course his mouth was out here, and they hadn’t got this tube down, you see.

And then the guy that was doing it said, ‘The other problem I’ve got,’ he said, ‘he needs to have it done. I said, ‘Well, obviously. He said, ‘It’s Friday afternoon. He said, ‘And I don’t know whether I’m going to be able to get an anaesthetist. He’s going to have to go down to theatre to have it put in under anaesthetic, and I don’t think I can get an anaesthetist on a Friday afternoon. So you might have to, you’ll probably have to come back Monday. So of course Mike’s writing on his board, ‘I want it done. I want it done. Because he’d obviously gone through that process himself of, you know, in confirming with himself that he needed to have it done. And he didn’t want to come away without having it done. And the guy said, Well, I’ll do my best. I’m going to try and ring round and see if I can call on an anaesthetist. And we waited and waited, didn’t we? Anyway he came back around about 2 oclock and he said, I’ve managed to get somebody to come from [city] who is prepared to, to come across this afternoon. So they took Mike to theatre that afternoon, and they managed to get it into him.

I have only had one hospital stay so far, for gastrostomy, and I suffered a bad reaction – the recovery time was 3 months. The gastrostomy was thought to be necessary because we were planning to have a holiday of a lifetime to New Zealand and the hospital considered it would be sensible to have the stomach tube in place beforehand. The procedure was horrendous. I know everyone is different, and of course had I known too much beforehand I might have refused it.Months further on, I believe improvements need to be made to prepare patients for the gastrostomy procedure. I am saying this for the benefit of improving care for future patients.

The ward nursing staff seemed to be unpractised with speech impaired patients, possibly due to temporary ‘bank nurses moving from ward to ward. But considering the ward is experienced at RIG and PEG procedures for MND patients, I was surprised they weren’t more aware of how to handle a patient with speech loss.

I was in severe pain for 24 hours following the insertion of my stomach tube and, with my inability to talk, I was not given pain management until a young doctor witnessed my distress. Imagine being in severe pain and not being able to tell anyone about it. In fact I was ignored pretty much. On the sixth day the consultant wanted me gone, saying I would recover quicker at home and clearly MRSA was a real worry on the ward, but my husband refused, saying I was too ill, and the nursing staff agreed. So I stayed one more day and I was given an enema before I left. They insisted it was bad luck and probably due to the gas and constipation. If constipation has a major effect on the patient’s recovery, could it not be organised through the GP and district nurse that prospective patients have an enema at home a day or so before surgery?

No one asked if I could eat or not, and presumably had no information about my pre-op condition, since I was not offered food, nor was I asked by nurses if I could eat. Early on they twice attempted food by a slow drip into the tube but my painful stomach rebelled. I was not offered food by mouth, but towards the end of my stay I requested some, because I was hungry. It would have been helpful if soup had been available at any time if I felt I could eat it, but it was not an option. I would have liked the staff generally to have been more aware of my condition and considered my difficulties. There were not enough skilled nurses.

The speech therapist and dietitian were caring and helpful and monitored my progress on the ward frequently, but the release letter from the ward did not arrive with the GP until almost a week later. We had to chase up the district nurse. There was no system in place for me.

No one seemed particularly concerned about trying to get me up and moving ahead of my departure from the ward. A physiotherapist should have been involved, because seven days of pain lying in bed made me extremely groggy and my diaphragm was weak. Perhaps I am expecting too much from the NHS.

I was told the stomach tube inserted was a RIG. It is done by a doctor in the Radiology Unit with nurses to assist. Gas is pumped into a tube via the nose to inflate the stomach to make for accurate placing of the tube. All the while I was able to follow the procedure on the monitor. Four injections of local anesthetic are given around the site, and the contraption itself is pushed through the numbed skin straight into the stomach. The connection cap is fitted on the surface of the skin just below the rib cage.

Four months on from the gastrostomy, the fog lifted and I felt more in control of myself again. I got back into dog walking every day, albeit only short distances, and also cooking meals.

We had to cancel the trip of a lifetime because I felt unwell after the gastrostomy and we considered it would have been a huge risk. However we have just had a very successful five-day driving trip to Germany. Because the roads are so smooth, it was not a tiring way to travel.

But what I was just going to say is that we took the decision that rather than rely on nurses to come in and do feeds and all of that stuff, we’ve all along have said we’d prefer to be trained how to do these things. Because we wanted to sustain our own independence, so that we could still carry on doing the things that we want to do. So like now, for example, Mike has a portable pump, because he’s fed by a pump once a day. And it’s a portable pump [Mike writing on whiteboard] and we just, we link him up to it and he gets fed, and, you know, we still go out and go to a restaurant or, you know, go and see friends and whatever. It means that we’ve got independence. Sorry? Jug? Your jug for your other feeds, is that what you’re talking about? Yeah. His, his feeding regime is that twice a day, morning and lunchtime, he’s fed by a syringe, a big syringe and he just, he decants the feed into a jug and feeds it in. So he does that twice a day. And then in the evening he’s pump-fed for about two, two and a half hours, in the evening.

The MND specialist got in touch with a lung specialist at a different hospital. And they got me in there for a week and to learn how to use non-invasive ventilation. You have a mask and it just blows air up your nose and into your mouth. And so I was there for a week learning how to use that.

But it was so wonderful, because I’d not been sleeping. I had to get up in the night and sit in the chair and open the window because I couldn’t breathe. As soon as I lay down I couldn’t breathe. And it was so wonderful to be able to lie down and sleep. And I’ve been using it since March and I can be asleep for eight or nine hours. And I have the most wonderful dreams. And it’s really made a big difference. And my voice was going very strange before I went on this machine. And then it seemed to cure it quite a bit. And evidently it’s the, you’re not getting rid of the carbon dioxide, so that’s why you feel rotten and it affects your body a lot. And so they test you, they test your blood to make sure you’ve got the right levels of oxygen and carbon dioxide. And evidently they only used this machine from last January for MND sufferers. And I said, ‘Well, what happened before that?’ He said, ‘Well, you didn’t last very long. Two or three weeks. So I said, ‘Well, I was so lucky, wasn’t I?’ Because if they’d not put me on the machine, I wouldn’t be here now.

Gosh. So that, that has the potential to make a real difference to

It has.

‘people’s survival.

Yes.

Do you use it during the day?

I do. I sleep, have a couple of hours in the afternoon and that just gets me through the evening, because I wouldn’t last all evening. So it’s nice, because my husband comes home at lunch and then I go and have a sleep, and then he’s home at teatime, and then I can watch all the programmes and have friends round or whatever. And it’s made a big difference. And evidently some people don’t like it, but I – well, I couldn’t manage without it. But it has made a big difference to me, yes.

Over the following couple of years my condition has deteriorated to the point where at the moment obviously I can no longer walk, can no longer weight-bear. I have relatively little use of my arms now. But still I’m able to sort of talk and so on quite happily, provided I have a ventilator. Anything more than that and without a ventilator I run out of breath very quickly. Initially I was given the ventilator just for night use. But that was in what? March 2006. But within a couple of months I was using it most of the time because the breathing was being affected, the chest muscles and so on were being affected by the same condition.

So the ventilator is quite a new thing that you’ve had. How have you got on with it?

Well, I was lucky. I got on with this particular ventilator very well. It’s a non-invasive, positive-pressure ventilator. Just using a nasal mask, which among other things does allow me to speak quite normally. And I adapted to it very quickly. I’ve never had any real problems with it at all. Obviously there are slight concerns now, because using it all the time, one has to take into consideration things like power cuts as a possibility. And one of the things we arranged to get in fact was a battery backup, so that if we do have a power cut, it’s quite straightforward to switch over to that.

Well, again with the ventilator you can’t leave me for too long. You know, I’ve really got to be monitored pretty much all the time and have people within earshot. Because with this kind of mask for example, if I have a sneezing fit and my nose gets blocked afterwards, starts running and gets blocked, then with the ventilator blowing away it can be quite difficult to breathe. Or a coughing fit or something like that. Also I cannot reach out and get myself a drink. So you can’t just leave me indefinitely. The ventilator dries you out a lot and you get sort of tickly throats and things like that and start coughing and choking. So, you know, you have to have somebody around all the time.

But I think really before he got the ventilator he was in a very shabby state, his breathing and the toxicity, and the headaches, and the falling asleep all day long. The ventilator, a sort of bi-pack machine was absolutely astonishing. It reset his whole system. It gave him energy, he didn’t have to rest between every process of getting up, you know, shaving and teeth and, you know, which was really laborious. It absolutely restored his system. Only now I suppose, less than a year later everything else has caught up and it’s, he’s more and more dependent upon it put it that way, so.

I mean we had problems in the first hospital with a ventilator because it was a machine they’d only just acquired. They weren’t familiar with how it worked. That was one of the reasons Bill went back to the hospice to get it set properly, the alarm kept going off and they didn’t know why, and in the end they just rang the manufacturers, who said it’s simple, you know, why they hadn’t done that in months goodness knows. But now we’re sorted we go to, a sleep clinic and a different hospital for the respiratory consultant, and there is a, a problem I think with, you know, sort of seamless care. But at the sleep clinic they download from a plastic chip in the card in the machine all the information every three months, how well it’s working and if it’s leaking and what’s going on here. And they actually, for us, because we like information, have given us the greatest information and understanding. When we saw them last they said, ‘We can tell you the machine is doing ninety-five percent of the work for you at night. So we know that without it Bill wouldn’t be alive, and they told us, because well then you tend to ask, ‘Well so what next?’ ‘Because you don’t know, I mean do they ramp up the pressures? Do they reset the machine? What happens here? And they said, ‘Well no basically. They said the most startling thing actually, when we’re asleep at night all our muscles are paralysed, all our motor muscles except our diaphragm that we need to breathe, except in Bills case of course it’s packing up. And that’s to protect us from things we may do in an, in, in our dreams or extreme things that we may encounter in our dreams, which is extraordinary’

Yes.

‘actually.

It is.

So we had this amazing piece of information. We knew the machine was doing most of the work and the answer to the question about, ‘Well what next?’ was, ‘Well when you are dependent fifteen, sixteen hours a day or using it that much,’ because Bill will use in the afternoon for a couple of hours and will use it sort of about twelve hours a day now, ‘we say you’re ventilator dependent at fifteen, sixteen hours and we’ll issue you with a backup machine so that you can have it, you know, in case the other one goes wrong or something like this. And basically from there on you are making choices about, about the quality of your life and, you know, the end of your journey with MND,’ which was a bit emotional but was the most helpful thing.

Unfortunately by this time we’re talking approaching Christmas of 2005 and Teresa’s condition had deteriorated quite significantly. She was having difficulties, severe difficulties, with swallowing and the hospital were saying to her that she should be having a PEG tube fitted. She wasn’t terribly keen on that idea but was allowing the family to persuade her to have it done because we wanted her round for as long as possible. And she said that she would like to get Christmas over and then, OK, she consented that she would have it done. During Christmas she appeared to develop a chest infection which is obviously the thing that we were all most concerned about, the thing which is most dangerous to people with MND particularly ALS or bulbar onset. Shortly after Christmas she was admitted to hospital as a result of the chest infection but with the use of antibiotics and intensive physiotherapy and oxygen she was able to be discharged.

She was discharged less than a week and whether it was another infection or if it was the same infection returning we don’t actually know but was then re-admitted again to hospital, not the same hospital as an emergency with breathing difficulties. We did while she was in the hospital this second time in January look at the feasibility of a transfer to the hospital that would do a PEG tube. The reason that we were looking at that was because obviously the primary concern was fighting the chest infection but while Teresa was fighting this chest infection she wasn’t taking nutrition. And for somebody who was only seven or eight stone can’t afford to lose much and she was clearly losing weight rapidly. With everything going on obviously she probably didn’t have much of an appetite.

Eventually the hospital did start to feed her intravenously. Her breathing difficulties got worse and worse. And we went from oxygen to positive pressure ventilation and the use of a, I believe it’s called a Nippy Unit, which initially I understood was usually used only at night. But within days she was virtually living in it and still having considerable difficulties in clearing her chest and needed almost constant physiotherapy in order to breathe.

We had at times, at the time when she could communicate effectively I had discussed with her where she herself wanted to draw the line. We did not want to do, embark on any procedure that she, herself, I knew did not wish to consent to. And reinforce that, to, with Teresa, with Teresa had actually given me her power of attorney, an enduring power of attorney so that I could obviously speak for her authoritatively with the healthcare professionals. Her dividing line, the PEG tube was close to it but she had indicated that quite definitely she did not want invasive ventilation. That was, that was her definite line in the sand.

It actually wasn’t discussed as an option at the hospital. They were using the positive pressure ventilator and high levels of oxygen. And perhaps they felt that invasive ventilation wouldn’t have given any improvement over what they were already doing anyway. I suspect that was the case. And that was the situation when Teresa finally passed away on the 31st of January 2006.