In the autumn 2005, I decided to find out about flying in the aeroplane, learning to fly in the aeroplane. My aim was to learn towards a pilot license. In January 2005, I passed a very stringent medical in order to start the course. And the course because of the weather, the course instead of being every week, was on average once a fortnight. I finished the course. I was assessed in order to take the second course and I was told I couldn't do that. But I told the assessor I was leaving for February and March because of the weather but that was not my reason [inaudible]. I had what could be described as a floppy leg. It was already floppy, no pain and I became suspicious. I went to see my GP and asked, “MS?” She said, “No, you're too old for that, too old for MS.” So I said, “What about lower motor neurone?” And she said, “No.” But she was extremely quick in referring me to a neurologist and on the 16th March I walked out of the outpatients with a walking frame, just as a precaution, I did not need it, but with the diagnosis of motor neurone disease.

 

Maryse: I went to hospital to admitted, to undergo…

To undergo…

Daughter: A test.

Maryse: So I and my friend went by ambulance, went to the nurses' station. And I said, “I need to go to the toilet.” “Oh we can't do that now, we're doing the take over.” So I retreated and went up ten minutes later. The same reply. I said “Well, you should know I'm going to wet myself.” I said “I'm not incontinent but I do suffer a little bit of urgency.” So then they joined me in the bathroom. Put me on the hoist and I said to them, I could speak a bit better than now. And I said, “Take my trousers off and I'll be okay”. “Oh no, you won't.” So they put me over the loo, sat in the hoist and then dragged me backward forward, behind to get my trousers down. You can imagine the result. So after that, they took me up to what was going to be my bed. I had a change of clothes that I brought in.

 

Maryse: So gradually I've not been able to sleep in bed because my nose for some reason gets blocked. My, the mucus membrane of my mouth dries up and normally one can swallow. But it's too difficult to swallow. And it's not so much the swallowing but the back of nasopharynx is also inactive.

Your thyroid?

Daughter: Nasopharynx.

Right. Is there anything that you do to help that? Anything that you can do?

Maryse: Yes, it will be later… There might be some help with sucking the saliva. So because of that, it's, it is very frightening not to be able to breathe in the night. In a, in the recliner, what is it called?

Daughter: The recliner chair. We tried several, didn't we, before we got one that we found was okay.

And that helps with your throat, with the swallowing?

Maryse: The carers and I have gradually learnt how to position me. It's only in the last week that it is getting better. In the last week, example, I go to bed at 11.30. I need care between 2 and 3 and last night I slept from 3 until half past eight.

Daughter: Lie in.

Maryse: I didn't get up. I think the [inaudible] makes me a bit drowsy. So what are the changes? I was taken to lunch on Wednesday and it was tender fillet of steak, really perfect and my friend cut it for me. And I realized that the chewing is fine, the swallowing is fine in terms of food but my tongue has, is going or partly. It's not moving as it should.

 

Daughter: In November, [son] came, didn't he, but you were finding it quite difficult. If he hadn't come you wouldn't have been able to stay at home.

Maryse: Before that we investigated nursing homes in Bristol. [daughter] found this one in October and we came to visit it. And I thought it was the nicest one of them all. But I didn't want to leave Bristol because of all my friends. From March, my son, he came again from Australia and he helped me during the night to get up. I was losing more and more balance. And the carer said we should have two carers. Even I had a fantastic bath. If I went in that it became too hard for one carer and that was when I realised that it was time to do something. And [daughter] said, “Let's ring up this place.” And the response was that there might be a bed in the next week. I came here on the 10th January.

Maryse: You were saying, asking me about adapting. It's amazing, I came here voluntarily and it's my home. Something, I don't know what it is, but it's playing a positive influence, yes.

 

You said that you realised you had a lot of friends. You were telling me that off tape before. How have different people reacted to you? How have these friendships changed or not?

Most are shattered and frightened. But most of them have learnt to accept it for me. And when they come they ask, and if they can't see they ask for the changes, and I tell them. And then I say, “Turn the page.” That's my expression for no more. They all know I'm dying and it won't be long. So I say, “Right, turn the page. And what have you been up to?” and so on, and we don't mention it again. But they are very attentive to my needs, switching the TV on and so on. People are lovely really. But it is frightening, isn't it? So there we are. My philosophy is that a lot of people are going to die in the next week and they don't know it. And similarly a lot of people suffer pain. I'm very lucky, I don't. I've no pain which requires analgesic.