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I found that I couldn't stand on tiptoe. I was reaching up to get something off a high shelf, and I found that I couldn't raise my heels from the ground. Gradually I found that my foot was dragging, so I went to the doctor. Strangely enough, he knew what it was because he'd already had somebody that month with MND. So he was able to send me for tests and that's when… how it was diagnosed. I was quite relieved in a funny sort of way, because you always think the worst. I thought I had brain tumours and all sorts of things, in a way it was a relief to know. I find that if I know what's in store, I can cope with it.

Just so frustrating. Sitting here, I feel I could stand up and walk, you know. But it's just that your limbs don't do what you want them to. It's the frustration more than anything. I have a walker at home and I can walk a short distance, but it's very tiring and I find it's much easier to... Well, I cannot walk for a very long distance. I can manage in the house, but outside I need a wheelchair really.

We used to go on holidays to interesting historical sort of places, and walking around and looking at castles and various places. And we used to go for walks as well - which is very annoying not being able to do it. I think a lot of supermarkets and shops have rather narrow aisles and it's very difficult to manoeuvre a wheelchair around. So I think if they were a bit wider, with a bit more room to manoeuvre it would be much more, [chuckle] sort of wheelchair friendly as it were.

If I'm in a wheelchair they tend to speak to the person that's pushing me. "Does she take sugar in her tea?" Which makes me cross because my top half works, alright! [chuckle] But you're not on people's level, you're sort of below their level. It, sometimes it's difficult for people. People tend to walk along looking up rather than down. Well, there are all sorts of things they've done for me at home, like putting a stair-lift in and rails along for me to hang on to, and social services changed my bathroom to a wet room which has made an awful lot of difference. Unless my weight is over my feet, I cannot do anything and I have to be pushed from... I have to get up by pushing myself from behind, so it's no good people standing in front of me and trying to help me up, it's much easier to be helped from behind.

Quite often, people assume when you're in a wheelchair that you're slightly doolally. [chuckle] But my top half works alright, it's only the lower half that's not very good. I've found that the MND Association was extremely helpful. They were, and they still are, very supportive and they've been extremely helpful. Financially they have been very helpful, which they paid for half my stair-lift. The visitor I have, Liz Goodman, is so helpful. She's been… she's a real friend, she's always there if I need anything. I can phone her and she'll come and help. I'm very lucky because it doesn't hurt, and it's really the frustration that gets me down. It's, I think if people could understand how frustrated one gets - while I can do things for myself, I jolly well will. But I haven't done the exercises, except for massage on my ankles which go up like balloons because I cannot move my feet.

The hospice… it's very useful to be able to talk to people in the same boat as you are; they've been extremely supportive, and I find that it's a real life-line.

These support my feet; they go down and they've got a supporting bit under my foot. If I didn't have them my feet would just go like that and drag on the ground and I would trip up. That's what started it. I began to fall over because my foot dragged along the ground. I can walk without them. I'd get out of bed in the night and go to the loo, and I managed to do that but it's very tiring.

Talk to the person who's got MND and ask them how best they can help. Because sometimes, each person's MND is different and different people need different sorts of help.