Sylvia - Interview 25

Age at interview: 66

Age at diagnosis: 65

Brief Outline: Sylvia was diagnosed a year ago in 2005, after noticing difficulties walking. She can move around at home with a trolley, and uses a wheelchair or scooter outdoors. She uses non-invasive ventilation regularly.

Background: Sylvia is a part-time book-keeper, married to an architect, with 6 adult children (including 4 step-children). Ethnic background/nationality: White British.

More about me...

Sylvia noticed just over a year ago that she was beginning to walk strangely. A friend suggested she try an osteopath, who immediately referred her to her doctor, thinking she might have had a stroke. She was also starting to notice cramps and fasciculation (muscles twitching). The GP sent her to a neurologist. She had a week of tests in hospital and MND was quickly diagnosed, within a month of first seeing her GP. She was referred on to an MND specialist at another hospital, where she was seen by all the different members of the team.

She had previously been on the internet looking for information about her condition, but after the diagnosis she felt a bit overwhelmed by the amount of information and by how gloomy and negative it seemed. Sometimes it helps when professionals are able to give people a bit of hope and reassurance about the future, even though it is important that they tell you the facts honestly.

A few months after the diagnosis, Sylvia started to feel very breathless. She thought at first she was having heart problems like her mother, but her specialist explained it was the MND. She spent a week in hospital learning how to use non-invasive ventilation (which supports breathing by providing extra air through a face mask). This has made a real difference to her life, and made her feel much fitter. She uses it at night, and has a sleep with the mask on every afternoon so she can keep going through the evening. She feels very lucky that this treatment was available, as otherwise she might not have survived. Generally she thinks the care provided has been wonderful.

At home, Sylvia can get around with a trolley which supports her and enables her to carry things around the house. Sometimes she uses an electric wheelchair at home, and also has a scooter to go into town and round the shops. She values the independence the scooter gives her. Her family and friends have been very supportive, and she continues to enjoy a busy life. She has been to MND Association events, and is looking forward to some events being arranged more locally so it is easier to get to them. Her husband is still working, so he cannot always take her to social events during the week, but she likes to meet other people with MND and learn from them. 

Her husband comes home every lunch-time, but she can manage fine on her own at home while he is at work. He is keen to be the main person to help her with any personal care such as hair washing and showering, and she feels this has brought them closer together. They are going to start having help one morning a week soon, just so he knows he has one morning when he can fix earlier apointments if necessary.

She has thought about Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' and has decided not to make one. She would not want to be resuscitated, but she would want everything done to make her comfortable. She is about to be referred to her local hospice, where massage and aromatherapy can be arranged on day visits.

She wonders if hairdressing products might have caused a cluster locally, but it seems unlikely....

Do you have any thoughts yourself about what's caused it, or what has caused it locally with these other people that you know?

I don't know. Well, I know there's four ladies and a man in this area. But there's another cluster in another village nearby. At first you think - I mean three of us going to the same hairdressers, you think, 'I wonder' - and we all tint our hair [laughs]. Because you don't want to be grey, do you? [momentary microphone interference] And you think, 'I wonder what was in the tint?' But then hundreds of people would be like it. So you think, 'Well, it can't be that.' You think about the stress, because stress does a lot to you, doesn't it? And I was very stressed the year before I got it, for different reasons. And you think, 'Maybe you've just reduced your immune system from being stressed.' I don't know. 

And then you think about what you eat. And in the February before I was diagnosed I was a couple of stones heavier than I am now, and I was borderline diabetic. And I thought, 'I've got to do something about this.' Because it comes to people who are overweight, doesn't it? So I went on a diet. And I had, the only - I had a sweet tooth at the time, I don't have one any more - and the only way I coped with it was having a big bowl with raspberries, blackberries, blueberries, strawberries, all the berries on, and I had them on the table. So whenever I felt like something sweet I had some of this fruit. So that was from the February. And then when I was diagnosed I thought, 'All this fruit I've been eating, it's all out of season, it's come from Chile, all over the world. How did it get onto my table in pristine condition, not a bug in sight?' And you think, 'It must be full of chemicals.' So now I buy organic as much as I can. Because you think, 'It's not normal to have raspberries in February, is it?' And they're all, I mean you don't have to look in them for bugs, do you? Whereas when I was little they were all full of little creepy-crawlies, weren't they? So you think, 'All these pesticides and--' So I might have done it really to myself, I don't know.

She told friends she was ill in her Christmas cards, because she thought they'd feel awful if she...

Well, I told my family and close friends. But then there's people on your Christmas list that you were friendly with years ago and you think, 'Well, I can't put that in their Christmas card or their birthday card, and that's the only contact you have.' And then you think, 'Well, gosh, they would feel awful if I popped off and they hadn't even known I was ill.' So there's a couple of old friends that I don't see that I wrote to recently, just to put them in the picture, really. But close friends, it was easy, and family. It's just the distant friends, isn't it?

And how have people reacted differently?

Oh, everybody differently, everybody differently. Some want to talk about it, others don't. One particular friend burst into tears, and I was comforting her [laughs]. But she's a very good friend and she does a lot for me. But everybody takes it differently. And some look on the black side, and some look on the better side and sort of think, 'Come on, we'll get you through this.'

When she first noticed something was wrong it felt as if she had 'forgotten how to walk'.

I noticed in about June last, last year that I was walking a bit strangely, but I couldn't put my finger on it, I couldn't understand what I was doing. And it was as though I'd forgotten how to walk properly. And I didn't tell anybody, I just kept trying to make my foot go the right way. And then I went to a flower show with my daughter, and the car park was quite a way from the flowers. And we were walking and she said, 'You're walking very strangely, mother.' And I said, 'I know. I feel as though I've forgotten how to walk.' And she was laughing and I was laughing. And that was it really. And that was in the July. And then in the August it was my husband's big birthday and we'd got a big party at my daughter's house. And I was all right, but I was stooping. And I found if I stooped I could walk more easily, sort of propelling myself forward. And a friend said to me after a while, 'What's the matter with you? You're stooping.' I said, 'I know. I feel I can walk better if I stoop.' And she said, 'You need to go and see an osteopath. Promise me you'll go.' So I said, 'Oh, all right then.'

Using a scooter gives her great freedom. She can get into most shops. When she got stuck in a...

I've got a scooter as well, which I haven't used for a few weeks now, because they've had all the roads up and I've got to go on a special route because of the dips in the pavement. But that's wonderful, because that's freedom. Because however much your friends are good and take you out, you only see what they want you to see. But when you go out on your own you can meander and just browse at things, and you don't have to sort of be hurried along. So that's lovely. Yeah.

What do you do when you get to, say if you want to go into a shop, you get off the scooter or?

No, no. I can go into the bank, I can go to the building society, the card shop, the chemist's, the stationer's, and the big store. Most big shops you can go in and go round on your scooter. You can even go in the lifts. So it's very good, yeah.

Yeah.

The smaller shops you struggle with.

Yeah. Either because they've got a step or because there's just not enough space.

And you can't turn round and come out.

Yes. You have to go into reverse.

Yeah, well I did in, in Timpson's because I needed a new key for the back. And I got in and they did me the new key, and I said, 'Well, you're going to have to carry me out', because I had to reverse. But it is a wonderful feeling of independence.

Mmm. Do you drive still?

No. Well, the problem was I had a little automatic car, and it's my right foot that's gone and that's the one you use. And I thought, 'If I caused an accident I'd never forgive myself.' So I gave up quite a few months ago.

Have you thought about getting, because you can get hand controls?

Yes, but when I got to wherever I was going, I couldn't get out of the car, because I couldn't walk anywhere, could I?

Right.

So I thought, 'Well, I'm better with my scooter really.'
 

Her husband was upset when she considered having outside help with washing and dressing. Now he...

Has, has it affected your relationship with your husband?

It's made us closer. It's funny, isn't it? Because the doctor said did I need any more help? And I said, 'Well, I'm struggling getting dressed.' Well, having a shower and washing my hair was worst. I was just, it just wiped me out after I'd managed to do it. And she said, 'Well, we can get the Social Services. They can come and help you.' And the lady came from Social Services, and she wanted my husband here. And he got very upset. He said, 'What's wrong with me? Why didn't you tell me?' He said, 'I'll wash your hair and shower you.' And it was quite funny, because when you get old you don't really look at each other any more in that way. And I thought, 'Oh, gosh, he's not seen me naked for years. I don't know whether I'll like that.' But anyway he said, 'Well, give me a try before you start getting other people in.' I said, 'Oh, all right then.' So he's doing very well [laughs]. He's learnt how to put shampoo and conditioner on. Because they don't know about these things, do they? And so yes, we're a lot closer I suppose, because I've let him in. Because I was so independent, and you do get independent, don't you? And also this is the first time we've lived just the two of us. Because it wasn't long ago the youngest one was at home, and my mother. And so the last couple of years it's just been us and the dog, and now it's just us. So it's the first time we've been just the two of us [laughs]. Yeah.

But it's actually quite nice, in a way.

It is. And it's funny because I mean boys do their own things, don't they? But four girls at home, they want to talk to you all the time. And girls are different. Boys, if you give them food and the telly, they're fine, aren't they? And then clean clothes. Girls are, 'She's taken my jumper.' 'She's done this.' And so we never finished a conversation. We used to have to go out to talk [laughs]. And I think he just switched off. So - all these women around. And then when we were on our own, I'd say something and I'd wait for an answer, and he'd say, 'Are you talking to me?' I'd say, 'There's nobody else here except the dog.' 'Oh.' And I said, 'You're going to have to listen to me, because if I speak, I'm speaking to you.' [laughs] So that took a bit of adjusting, anyway [laughs].

She wants honest information, but it's good to be given some hope and encouragement, not just...

Well, I think because I'm quite inquisitive and say, 'Come on, spill the beans' they tell me in more of a blunt way, which my husband found very hard, because he tends to put his head in the sand a bit. And he didn't cope with it very well. But when it's yourself, I think you cope better than coping for somebody else, don't you? And I do push them a bit when I see them. It's like, you know, 'How am I doing? How long am I going to last?' [laughs] And they don't know, they don't know. Everybody's different. And the original specialist I saw, I saw him in September, and I said, 'I met a man at a garden party who'd got MND, but he'd had it for nine years and he'd plateaued.' And I said, 'That could happen to me. I could plateau.' And this specialist said, 'Ah, but a lot's happened in the last year, hasn't it?' [laughs] And I thought, 'Oh, I was trying to be upbeat and, you know, trying to look on the bright side.' And he was like, 'Get back down.' [laughs] So I suppose it was my fault for wanting to know everything. But I think - oh, and another chap I saw, who was a stand-in for the specialist, he was Irish, and he was really upbeat and boosted me. So as much as you want to know the facts, nobody knows the facts because everybody's so different. But if you do talk to somebody who gives you a bit of a lift, then it does help you, yeah. Because you can get, you know, really low. And nobody knows, they can't tell you.

What about your husband and, and, since the diagnosis, how has he coped with it?

Well, he put his head in the sand for a long time. And I had to keep saying to him, 'Come on. This is happening, you know. You've got to face up to it, because I can't carry you through it. I need your help to get me through it.' And that's how I felt I was being, that I was being the strong one for him. But then sometimes I'm not that strong, and I need him to lift me up. Anyway, he's a lot better now. And having never cooked, he's cooking and doing everything. But it is hard on your family, I think, and your friends.

What about telling the children, how quickly did you tell them?

Straight away, yeah. Of course, nobody knows anything about it, because it's such a rare thing, isn't it? I'd only heard of Stephen Hawking with it. And he's had it about thirty years, hasn't he? So you think, 'Well, it can't be that bad.' [laughs]. So then of course everybody gets on the Internet and looks it up, and it's all doom and gloom. And you've just got to say, 'Well, you've got to think about what you've got, not what you've not got.'

Non-invasive ventilation has made a big difference. It helps her sleep properly at night and...

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.

The speech therapist showed her a useful tip for swallowing tablets.

You get a speech therapist and a dietician, which I haven't needed too much yet. But they can suggest things to you. Like the speech therapist, she said, 'When you take a tablet, put the tablet and the water in your mouth, then put your chin down and swallow.' And it's so much easier, because you block off your windpipe when you put your chin down. And I didn't know that. So, you know, that would help loads of people, not just MND people, wouldn't it, because it's awkward to take tablets. And so the help is wonderful.

She suggests professionals need to give people 'good facts as well as bad facts', because people...

Well, I think with regard to professionals, I agree that you should spell it out and say exactly what the condition is, but also give people a bit of a lift and say, 'It could plateau. You could be like Stephen Hawkings. It's not all doom and gloom. And you just don't know.' Because you've got to have something to cling on to, to think, 'Well, you know, it could take five years, ten years.' But you've also got to have the facts that it could be one year or two years, or whatever. So I think I've always wanted the facts, but you've got to have good facts as well as bad facts. And I would say the same to any other MND sufferers who've just been diagnosed. You don't know, nobody knows what's going to happen. And cling on to the things that it might not happen. And there is so much help out there, and everybody's so lovely. They're all really kind, lovely people, caring people. So there is a lot of help. And just cling on to little rays of hope, really. Because you just don't know. And at the beginning I did get very low [door closing], because it was all doom and gloom. But then as time goes on you think, 'Well, there could be a plateau, there could be a cure.' You just don't know.

She has been lucky to have a good life and happy family, so she doesn't think 'why me?' A vicar...

I've got two sisters, and the younger one unfortunately has got Alzheimer's, which they think there might be a link, a genetic link. Because it's weird that out of three daughters one's got MND and one's got Alzheimer's. And my other sister said to me, when she lost her daughter this year to cancer, so she said, 'Oh, why us? You know, it's the three of us.' And I said, 'Well, why not us? You know, we had a wonderful childhood, and other people didn't. So you've got to think, well...' You've got to look at it like that, I think.

Do you ever stop and think, 'Why me?' though? Does it?

I don't actually. Because as I say I have, I did have a wonderful childhood, and I've got a wonderful husband, a fabulous family, loads of friends. I've had some beautiful holidays. So I've been lucky. Obviously I would like to have got to my 80s, but you've got to go some time, haven't you? And... no, in fact I talked to a vicar and he said, 'I bet you thought, 'Where's God?'' But I said, 'It's nothing to do with God, is it? He doesn't give you these diseases. He teaches people how to cure you.' And I thought that was a funny thing for a vicar to say. He said, 'I bet you felt like shouting at him, at God.' I said, 'No I didn't. It's up to me and him, isn't it?'