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She wishes her daughter had not been invited to come with her, as the diagnosis was a great shock for her. Professionals need to tailor what they say to individual needs.
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Yes. That first time, how do you feel about the way you were told?
Well, for me it was so impersonal. It felt as though it was a demonstration of the facts in order for the students. And it actually meant that I didn't feel emotional at all.
Well, it felt very clean and antiseptic.
Were you glad about that, or?
Well, it stopped me being emotional. But it was really bad for my daughter, who took it on full blast, you know, and she found that pretty grim. I was, obviously I just didn't want it to be that, I didn't want it to be that at all. And so we had a long session, which was exhausting, while it was all orderly spelt out, including, “You may have a second opinion.” And so.
Which was what your daughters wanted?
Yes. We went next door and saw the nurse, then the coordinator. For me, that was exhausting because it seemed repetitive. I could do without that then. I already knew what she was telling me about because of my experience. And, then [daughter] had had enough.
But as far as professionals are concerned, again we are unique, and I think how much and what you give them is very much to be tailor-made to the individual, and of course their supporters, their family. Sometimes it's them you'll see rather than the patient, isn't it? It depends so much on what the set-up is and who you identify with, if you like, or they identify what their needs are.
Because you felt that, that the daughter who was with you at the diagnosis, probably her needs weren't very well met?
No. I thought, I wished she hadn't been there. To have invited her there I thought was rather outrageous. Her partner was very ill at the time. They didn't know that, but why should she be lumbered? They don't know. And I should have guessed and I shouldn't have shown her the letter. So that was a mistake I made. |
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Some people have been supportive, others have stopped phoning altogether. She has not yet thought how to tell her old school friend.
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I found it very interesting, I'm sure other people find it so, that the people who pick it up and ring you up maybe every week, and the people who can't face it and go silent on you after twenty years or more. That in itself is quite interesting, yes. It depends on their own life experience, I think, very much.
And these friends who've contacted me, two of them do quite a lot. I haven't told my old school friend. I don't know whether you write and say, “Cheers, dear, I'm on my way out.” |
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She considered taking riluzole but decided she'd rather not risk having side effects. Quality of life matters more to her than quantity.
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Oh, well, I decided not to have - what's it called, the?
Riluzole?
Yes. Because I thought I would have it after talking to professor. He said, “Well, you can always abandon it.” And then when I got home I realised how long it takes to get rid of things in your body. And I seem to have responded very badly with side effects to almost every medication I've ever had. And so I thought, again, what matters is quality of life, not side effects and battling. Just to take the natural flow of things.
I have a great friend from, mind you another friend of mine, living in Canada. He had cancer and he had treatment which knocked him out for the last year. He was a professor of English. And it just, you know, it was worse than being dead. And I think a lot of people say, “There are no effects.” But I don't think I'll risk having side effects, because the anti-cancer things have all given me side effects. And as I say, I think I'll go with the flow. And hopefully by living a sensible life I can keep up for as long as the, it lets me, and see things clearly when I'm not tired [laughs] and so on. |
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After diagnosis she spent an hour in clinic being given information. It was too much at that stage and she doesn't want to think about the negative side.
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Well, I, that hit me very early on. I really didn't want to be obsessed with the disease. Lots of literature came in. I saw somebody after - for a whole hour I think - after we'd seen and had the diagnosis, filling me up with all the things that were available, all the things to do. And I didn't really want to be lumbered with all that straight away. I still don't want to focus on the negative side of what's happening. I really think it's important to look for what is good, whether it's your family, my grandson, who's tiny, and whether it's art, or music, or gardens, or - I think quality of living is far more important than focusing on, you know, your finger's gone downhill and your face has sagged [laughs]. |
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It's frustrating trying to make yourself understood when you have speech problems. She went to an adult education class but couldn't contribute as much as she wanted.
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We were talking about how you feel about how people react to your speech. Perhaps you could say a little bit about that.
Well, I find that very difficult. Some people are good at listening and always have been. Others are shy and run away. Some just don't hear and think you're mad [laughs]. It's not comfy. I don't find I like asking for things. I just like to go and pick up and pay in shops. And for instance I think there's somebody new over the road, but I can't knock on the door and say anything because it just sounds, oh, she may not even understand what I say.
Do you ever say to people before you start talking to them just, you know, “I've, I've got MND and that's why I'm a bit slower”?
Well, sometimes I say, “I've got a voice and speech problem.” It depends on what one's got to negotiate, if you're pinned down. I find the phone bad this way. I do say, if I've got to debate something I tell them. And I also say, “I'm not dementing. I am slow.” That is all right unless you're phoning something and it goes to India, and you can't understand them and they can't understand you.
Call centres?
Yes, call centres are hard. But it's not just there. I mean north of, north of England, they have difficulty. And again I tend not to put a good argument out. I limit what I say, and that I find very frustrating. Or, you know, you can't just neatly spell things out. You have to reduce it all, and it's like trying to make a nursery rhyme of what you say. Hopeless sometimes.
And the, the concentration and tiredness issue you were talking about.
That's huge. On those I tend to avoid ringing people in the evening. If it's a friend I'd ring in the morning because I'm less tired and my voice is stronger. But, you know, that, as you say, concentration is a big issue. And I still go to courses to try and hold it. And that's not easy either. I had to explain to a tutor, “I can't discuss with you or with the class.” I have difficulty writing notes. And I really want the notes, so I must find one of those little recording devices, I think. One of them was very nice about it and he said, “Oh, fine. Don't worry about it.” I was bursting with an issue on one of my courses, so I did bag the tutor afterwards amid everybody else ganging up wanting to. But that's not easy and it, you've passed the, you've passed the significant moment. So that's frustrating too. Because sometimes you feel you have a contribution, and you would like them to respond and enlarge, but you can't do that. So there are limitations to courses that are related to artic. And voice. |
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She was depressed after the diagnosis. Her family took her on two holidays before her PEG operation and it was a very healing experience.
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Yes. Well, I, at the very beginning of the diagnosis it was suggested that I should have a PEG while I was fit, and I'd thought that made sense. It was something I'd already seen done. And so I filled in, you know, said, “Yes.” But then I had the opportunity first to go to Prague, and so I sort of said, “Not until after that.” And then I, my daughter and son-in-law - I was very depressed at that time. I knew it was logical to have it, but I did feel blackened by the diagnosis - not tearful, just flattened. And so they marvellously booked up as a surprise a trip to Bruges and Ghent with - that's going on the railway instead of flying. Prague had been bumpy. And I really felt that quality of life mattered more than anything. One didn't know how short one's life was. And it was something I'd never done. And I knew it was intimate and uncrowded. So I went, and it was absolutely a turnaround. It was a lovely experience. It wasn't full of tourism. It was just delightful. And in a way it linked up with my past, living in Europe a bit, and it brought things together. I can't explain how, but it was a very, very healing thing to do. So I was glad I put off the PEG for another bit. And then I got another date, but it was just wrong, because they realised how good the Bruges trip had been and they thought they ought to get another one in, while I could still travel. And we went to France, this time to Chantilly. And again it was this thing about, I felt guilty, but it was a lovely experience. And I think it's given me so many images and feelings and connections with the beautiful bits of living, that it's been well worth whatever happens with the PEG when I have it in about ten days' time. |
