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She saw two neurologists before being diagnosed with PMA. She had a range of tests and treatment with intravenous immunoglobulin, which made no difference.
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I first suspected there was something wrong in the beginning of 2003. I was a very keen dancer, Scottish dancing, Scottish country dancing, and I found that as I got to the end of a dance I couldn't quite make it. I was having to scurry around, and I couldn't jump up and down in the bouncy way you're supposed to do it. And I found this was getting worse. I also found that when I was doing yoga, I couldn't support myself on my arms to do the cobra and things like that. And when I was walking, I used to be a very fast walker, and I found that my feet were flopping as I was walking along. I couldn't understand what was happening. I thought perhaps it was just my age. It might have been the menopause, something like that. But as it didn't seem to be getting any better, I went to my GP eventually. Partly because I'd read in a novel about somebody who had motor neurone disease and I thought, “Oh, God, this might be it”. So she took lots of blood tests and they took a while to come back. And I had to go and see her again, and she said the blood tests hadn't shown anything. So she thought she'd refer me to a neurologist. She thought I might have something called myasthenia gravis. So she just gave me that as an idea to start with, which put me off the idea of thinking I'd got motor neurone disease.
So I then had to wait about four months before I saw a neurologist, which was a bit nerve-wracking really, because I didn't know what was wrong with me and I could tell that things were going slightly downhill. Then I saw a general neurologist at the local hospital and he put me through all the tests. And he said he wasn't sure what it was and he would like to have a second opinion and he would make an appointment for me to go to the main hospital in the region, where there was a specialist in the, whatever he thought it was, which he wasn't telling me. And I'd have to wait to see her. So I went home and I immediately went to the computer and looked up motor neurone disease. And from the way he'd been testing me, I decided that was what I must have. So I didn't feel too happy about it, but I just had to wait then, you see.
So again it took another three months before I got to see the specialist. And I was actually admitted to hospital for three days while they did all sorts of tests on me. They put me all round the hospital, they X-rayed me. They ran the electric currents through me. They measured my breath and everything like that. And then the Prof. came and examined me herself, after I'd been examined by whole teams of medical students and things like that. And her conclusion was that I might have another complaint, which she proposed to try treating with gamma globulin or immunoglobulin, or something like that, or I might have motor neurone disease, but an unusual kind of it. So I went into hospital for a few more days to have treatment with this globulin treatment. That did no good.
So in January I went back and she decided that what she thought I must have was a fairly unusual form of motor neurone disease, which she called progressive muscular atrophy. And I then had to start visiting the hospital every two or three months for check-ups. And so they did all my motor neurone scores and things. They tested all the muscles and took my weight and things like that. |
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She was prepared for the diagnosis and the professor was kind and reassuring. She told her every patient is different and not to worry about all the different symptoms.
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It was really the whole of 2003 when I was pretty sure something was wrong with me. In hindsight, looking back into 2002 there had been a few little times when I'd have a trip, or I hadn't been able to lift something up onto a British Rail carrier, you know, luggage carrier, I couldn't get a case up onto it. I thought my arms had got very weak. But at that time I didn't think it was anything serious, you know. But definitely through 2003 I was worried that things were going, and I had an idea of what it might be, because I'd read things. So, you know, when the diagnosis comes it isn't necessarily into complete ignorance. It wasn't that much of a shock because I had more or less sussed out what I thought it was and I was sort of prepared for it when it did come. So you know, I think my reaction wasn't as upset as they'd expected me to be, because I'd already faced up to it to a certain extent.
And so when, the way they told you the diagnosis, was that the best way they could have told you, for you?
I think so, yes. Because I had already talked to them about it and said, “Look, you know, my view is that it's, from what I've read it sounds like this”. And so they, I think they knew I wasn't going to be terribly upset. And the professor is a very nice person, very, very friendly and doesn't talk down to you at all. She wasn't patronising in any way. And so she talked to me as if I was an intelligent person. And, yes, it was a good way to do it I think, yes. I think what they didn't do was to tell me everything about what was going to happen. Because they said to me, “Every patient is different, and not all patients get all the symptoms. So if you read through the booklets and things, it will tell you all sorts of scary things. They may never happen. So don't worry about them”. So I accepted that as a way of living and decided I wouldn't worry about things until they came. So that's how I've been coping with it really. |
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Her husband has improvised solutions which are cheaper and more convenient than the official recommendations. Her OT is helpful and takes away any equipment which doesn't work out.
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We had to have a bathroom revamped. This house has a change of level of one foot, that's two steps. And both the bathrooms are up those two steps. So we had to work out a way of getting up those two steps once I couldn't walk or when I was having difficulty walking. So we were being helped by the [local] Disability Resource team and hopefully we thought we'd be able to get some help from that. But in fact the professionals have to give you professional advice, which means they have to give you advice which conforms to all the rules and regulations. And they have to have ramps of a certain level, a certain size, and they can't really give you advice which would be, as one of them described it, “A Heath Robinson affair”. So they suggested that we should have a stairlift to get me up two steps. And a custom-built stairlift to get you up two steps would cost over £4000. So it wasn't a good solution. My husband reckoned he could do it better, and he decided to build some ramps and to buy a little shopping trolley, a shopping scooter, a three-wheeled shopping scooter, which would get me up those ramps. And it's been a very good solution. So the professionals can only go so far with you and they can only recommend things that are in their domain. And sometimes you have to rely on friends and relations to make a more, do a bit of lateral thinking and find something more appropriate for you. So that worked.
Has there been anything else within the house?
We've had the bathroom adapted to make a wash-, a flat area, a wet room. And that's been good. I now have a little seat that can be rolled over the loo and rolled under the shower, and I can just transfer on to that myself. And so that's worked quite well. Again the advice from the professionals was simply to adapt a little bit of the bathroom, not to have a full revamp of the bathroom. I think they have to try and save money. And again it would have been an unsatisfactory solution. So we had to go for the full change of the bathroom.
So you've had to cover the cost?
It was expensive, yes. We did get a grant from the Motor Neurone Disease Association, which was a help towards it, which was very nice of them. Other than that, there's little things that have been useful. I have a mobile arm support to help me when I'm eating. And that's very handy. I can still eat, even though my right arm is now very weak. I can still feed myself a full meal, which is great. And the other thing is transfer boards. Now that I can't stand up any more I need little boards to transfer across. And some of the transfer boards are naturally made to take a heavy person. So some of them will take a 17-stone man, you see, which means they're big, heavy boards and I can't move them myself. So again we've had to be innovative and make smaller ones, simply just to slide you across from this seat to the toilet and things like that. So they've been quite useful.
Where do you get those from? Where did you get them?
My husband made them. He said, “I've got a bit of old wood in the garage. I'll get it out and see what I can do with it”. And so he's done that. Also he's built ramps in the house and in the garden so that I can get around.
And the, the armrest, where did you get that from?
Oh, that was supplied by the hospital, by the physio department in the hospital. I think they were doing an assessment of it as a new provision. And they did ask me to fill in a questionnaire to see what I thought. It had to come complete with a chair, because it has to be fixed to the back of a metal-framed chair. So that came as well. And you get an awful lot of chairs in this business. You've got to have a chair for the shower, a chair for the arm support, and then I've got two wheelchairs, two scooters. And you just end up with so many extra bits of furniture that we've had to put an awful lot of our furniture up in the loft, out of the way, just so I can get around the house. So it does affect the house in that way.
One of the things that I've heard is that a lot of this equipment comes at the beginning, when it's not always needed and it's getting the timing right.
Yes, well, yes, my occupational therapist is very good. And she suggests things and says, “Well, we'll just try something, Judith. If it's not right, I'll take it away again”. And she's very good about that. She's very, very committed to motor neurone disease and she's very helpful. So I do like that. The one thing that was never suggested to us was to get a little shopping scooter. And that has been the best thing, because the armrests on some of the wheelchairs are very difficult to move. This has easy little armrests that you can just flip up out of the way. And I can now transfer myself from this, whereas I couldn't if I were in an ordinary wheelchair because the armrests are too heavy for me to lift. So that's another thing that's useful. |
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She's disappointed with the car she got through Motability - she was advised it would be suitable but she can't see out and finds it claustrophobic.
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And probably the main grouse I have is the Motability car which we got, which I'm not at all satisfied with. It's a Renault Kangoo, which is designed to be wheelchair-accessible. And I was assured by the salesman and by the person who came to talk to us about it that the floor was lowered, that I wouldn't need a window in the front of the roof to be able to see out of, because the floor was low enough to let me see out. And that was all untrue.
When I'm in the Renault Kangoo, I can see people from the waist down walking along the pavement, and nothing else. And that's really very frustrating. I can see the road surface all right, I can see when there's ramps coming up, but I can't see any of the countryside or the houses or anything like that. And you just feel like a monkey in a cage, really. It's very claustrophobic when you're up in the top of one of those vans. And I do wish that we'd been advised better. I did ask on the MND website, and they just gave me a list of stockists. I asked if anybody at the DDA had any advice to give, and again they said, “Well, you know, you've got to work it out for yourself” more or less. If I'd had somebody else with motor neurone disease saying, “Don't get one of those, go for something else”. Because another thing is that, being a van type thing, it's very, very bumpy. And as I've got a weak neck, it's absolute murder going over country roads. And my head is jumping around on my shoulders and I have to sort of cross my arms over and hold myself into the machine, into the chair. And it's absolutely horrible.
So at the moment I can still transfer into the passenger seat for long journeys. And we take a blow-up cushion and that can be quite comfortable. But for short journeys where you're just putting in the electric chair in and out, it's only bearable for twenty minutes. I've not gone on a longer journey. That's a disappointment, really, I think. I was very disappointed in that. And it's such a cumbersome process getting people to come up and show you the machine. And you have to wait while they get a suitable one in, and then they haven't got a suitable one, so, “Would you accept one that isn't quite what you wanted? If not, you'll have to wait another three months.” So you say, “Yes, we'll accept that one.” And then it's not right. Oh, it was just a horrible experience. So I wouldn't, I'd recommend the Motor Neurone Disease Association or somebody gives a lot more proactive advice on what people should get for Motability. |
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She has looked at the BUILD forum. She doesn't want to make friendships with people just because they have the same illness, but she might change her mind.
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So I had a look at that [the BUILD discussion forum]. And, yes, there were quite a lot of people chatting on that, and I found it quite interesting. Obviously quite a lot of people with motor neurone disease find it a good resource, and just as a little chat room, really. It seemed quite friendly.
Did you ever want to get in contact with other people who've got MND?
Not particularly. I don't think that having a disease necessarily makes you the same sort of person. So, you know, making friendships just because you both suffer from the same disease is not really a good basis for a long-term relationship I suppose. But I might do as time goes on. If I feel I want some sympathy and somebody who understands exactly what is happening, I might be tempted to go on. |
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She thinks yoga and meditation can make people feel better, but is sceptical about any therapies which might claim to cure the condition.
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I don't have any reiki or anything like that. I used to do yoga. I used to teach yoga and so I do use the meditation techniques myself, and techniques to get off to sleep and things like that. But generally I find I don't need them too much. But I'm a little bit sceptical about a lot of alternative therapies. I think if you just do yoga relaxation you get more or less the same effect. And I'm not convinced about these healers, because I think healing is not what they're doing. They might be alleviating things, they might be making people more comfortable and calmer, but I don't think they're actually healing the disease. They're certainly not curing any diseases anyway. So I'd be a bit suspicious of anything like that. |
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She lost weight and was advised to eat high calorie, high fat foods and fortified drinks. A big plate of food is too daunting. She prefers not to eat in public.
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Well, as far as food is concerned, they were concerned about me losing weight at the hospital, because my weight went down from 9 stone to about 8 stone and it seemed to have a downward pattern on the graph. So they arranged for me to see a dietician, who came out to the house. And she went through everything we were supposed to be eating. Told me to eat lots of butter and roast vegetables in oil and eat as much fat and carbohydrates as possible, which is the opposite message from what you're getting everywhere else. And she also recommended some Fortijuice sort of things, which are quite pleasant actually. It's a juice-flavoured drink, which I find quite nice. I did have a go at another one, which was a sort of milky drink, and it was quite foul. So I wouldn't recommend that. But the juices aren't too bad and I've been having those. And over the summer I've been eating a lot of strawberries and cream and things like that. And I have put some weight on.
They haven't actually weighed me at the hospital recently because they can't get me on to the weighing chair, because they didn't have a hoist. But I have found that I've put a bit of weight on round my bum, which is not what I would like really, but it makes sitting a lot more comfortable. And when I got very thin I was noticing that sitting on any kind of hard seat was getting uncomfortable. And I didn't want to get bedsores or pressure sores or whatever they're called. So I'm quite pleased I've got a bit of weight round my bottom now. But I don't really want to put too much more on because my husband still lifts me to transfer. He can't be bothered to wait while I transfer on a board. He'd much prefer to get things over quickly and lift. And I don't want to get any heavier, or he'll get a bad back and then we shall both be in real trouble. So I have changed my diet to a certain extent.
I do try to keep plenty of fruit and vegetables going in, because I don't want to get constipated. And I have some fibre stuff which I have mixed in with my Ovaltine every night. So I do have to sort of work things like that. Most of the time I don't feel hungry, and looking at a great big plate of dinner is not very exciting. It's quite daunting in a way, and I just have to keep on poking it in. You just get your spoon and you listen to something on the radio and just keep doling it into your mouth and swallowing it and hoping that you're doing the right thing. If I had to decide when I was full, I'd decide I was full after three mouthfuls. That's about as soon as I start to think, “Oh, I don't want any more.” So you just have to keep on working at it really, that's the thing. I found tiramisu was very easy. That slips down very nicely. So when Sainsbury's had a special offer on tiramisu in the summer we got large amounts of it. And I did find that was one thing that slipped down easily, and was nice. But generally, because things don't taste very nice, especially savoury things, you just don't feel inclined to go on eating them at all. I used to love smoked mackerel, but it doesn't taste like smoked mackerel any more, it just tastes like something really, really salty and it just doesn't have the roundness of the flavour. So things just go off the menu, really.
Do you go out to eat at any time?
No, because it's difficult to eat in public. I will occasionally go and eat something that I can eat with my fingers or perhaps something that I can spoon up. But I don't take my arm support when I go out, so it's got to be something I can manage fairly easily without the arm support. And as time goes on I feel less and less inclined to go and eat in public, because I don't want to have people watching me and wondering what I'm up to. So I think that's something I would avoid in the future. |
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She tries to plan only one thing a day. She advises people to take their time and to rest between activities during the day.
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Well, I don't know how strong I'm going to be. I do get tired more easily now. And I have to think, if I'm going to go out in the morning I don't want to do anything in the afternoon. And if I'm doing something in the afternoon I take it easy in the morning. My breathing's getting a little bit more restricted now. And I think, I can't type any more very well, so I'm going to have to use voice-recognition software. And again, if your voice is going and your breath is going there's a limit to how well you can use that. So I've just got to see how much I can cope with, really, I think, and pace myself. Because I've found all along, if you try and do too much then you can tire yourself out very quickly. And I would say to anybody who's got it, “Take your time. Always take your time and don't rush. And don't let anybody else rush you. And give yourself a little rest between doing bits of things. And a little rest will let you recharge your batteries and then you can carry on a bit longer.” But I hope to continue writing and using the Internet and things like that, just to keep myself looking outwards rather than looking inwards. |
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She has adapted to changes in her arms and legs. She managed cooking by getting her husband to lift heavy pans and hot dishes. She took up hobbies which didn't need arm strength.
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Well I think everything got more and more difficult. Walking was like walking through porridge or something like that, you know. Managing to do the hoovering and things like that were difficult. I'd tend to lose my balance a bit. If it was windy and I was trying to walk anywhere I'd have to hang on to something. If I was going to sneeze when I was walking I had to hang on to something. And you progress from, you know, just walking by yourself to walking with a walking stick, then with a walking stick and somebody else and things like that. And you sort of adapt as time goes on. I found cooking quite difficult, but I used to get the meal into the oven. I could carry cold dishes and get them into the oven, often by sliding them on to the lowered oven door and then up into the thing. And then I'd leave it for my husband to get the hot ones out you see. So for a long time I was cooking the meal and leaving it for my husband to serve up, because I couldn't lift heavy saucepans. But I could put things into a saucepan if it was left on the hob for me. So all sorts of things like that, little stratagems which would make use of what I could do and then let him do the dangerous bits, I would carry on with.
The main thing I was able to carry on with was my creative writing, which I hadn't wanted to do. I wanted to do art and pottery and things like that, but I couldn't because of my lack of strength. So I went to creative writing classes and started writing short stories and things. And then one of the short stories was rather nice, so I wrote it into a novel. And then I thought I'd go on a course. So I went to the Open University and did a playwriting course for twelve weeks first of all, and then I did a full course on creative writing, which was good fun. And it kept me busy for the last nine months really and I've really enjoyed that very much indeed. And I'm going on to do another short course in the next few weeks on writing for the Internet. So that will hopefully improve my skills on the computer. So that should keep me happy. |
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She uses slippery nighties and a strap to pull her leg up to help her turn in bed. She advises people to accept when they need extra support, before they reach a crisis.
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Turning over is getting difficult in the night. And so we have to devise little ways of pulling legs up and things like that. It's just one thing after another, you know. You get used to one thing and you know, there's a sort of plateau every so often, where things go smoothly and on at one level, and then there's a little drop in strength in one area or another and you find you've got to revise everything you do to cope with that. So turning over in bed is the most recent one. And I now have a loop of, a strap to put round my foot, so I can pull my leg up to turn over. So that makes it easier.
It sounds like a lot of the things have been you and your husband being innovative.
Yes.
And thinking how you can get round problems.
That's right, yes, yes. It's mostly that. And, you know, sometimes my daughters as well are quite innovative. yes, that's what we have to do. Like just getting slippery nighties instead of cotton ones, because if you wear a cotton T-shirt it's much harder to turn over in bed. If you can get a slippery, stretchy nylon nightie, horrible though it is, it's a lot easier. And it's not easy to get a slippery nylon nightie these days. You'd be surprised how difficult it was. I had people scouring Marks and Spencer's for me, and there was nothing in Marks and Spencer's or British Home Stores. And I eventually found something in one of those horrible, cheap catalogues and I bought four of them, because they were just what I wanted really. And they're slippery and shiny and really rather naff-looking, but they are good at turning over in bed. So you've got to go for little things like that, you know, which help you. I believe some people like satin sheets, and we haven't got to that stage yet, but somebody was telling me that they're a good thing to have if you want to turn over. So just look for what you can get really.
And it's constantly changing.
Yes, it is, yes. I keep dreading the next thing, you know. I find that each thing you do is okay for a while and then, you know, like walking, I was beginning to dread having to walk anywhere. I'd dread having to get to the end of the garden path. I'd dread having to walk into the place where I was working. And I would dread having to get from here to the loo for example. And so gradually things become a bit frightening and then you have to sort of say, “Well, am I safe doing this?” And then you have a little sort of time when you're not quite safe and you think, “If I do this again I might fall. I'd better make another arrangement”. And so you decide to, you know, move into a chair, or have a ramp or have a handrail put up. And each little thing, you just have to, really don't push it until you actually fall. You've got to make the decision before you fall, because if you fall you might do more damage. So you've got to be a bit, it's no good being brave and saying, “I can do this” to the point where you actually have a disaster. You've got to give in a little bit before and accept that you're getting weak and say, “Right, well, I will now use a wheelchair or whatever”. |
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She has been very pleased with all the health professionals. Sometimes they are let down by the system.
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I've been very pleased with the health professionals. I think they've been very sympathetic and very helpful. The neurology outreach team has been very useful as well. They've actually come out if I've needed them. And they're always there at the end of a phone line. There's a helpline you can ring. I don't like going to the hospital because of the lifts and things like that. I find it quite claustrophobic having to go in a lift. And the lifts are very, very crowded and I really don't like that. It's really quite scary. So I dread the hospital visits simply for that reason. I think if it was on the ground floor I wouldn't mind nearly so much. But that's one of the things I don't like.
But the healthcare professionals, they have their own problems. You know, they get different managers in, who mess up their schedules and things like that. And any problems have come from that, really, not them as people, but because they're being messed around by management, really. But I must say the girls who deal with me are very, very nice and I have no complaints about them at all. And I know that they get together, and one of them will say, “Well, I'll talk to so-and-so about that for you and see if I can get, you know, if she can recommend anything”. So they're actually having a three-dimensional approach, really, to helping me. So I'm quite happy about that. I haven't had any time to use carers, really, Social Services carers or anything like that, so I can't really comment about them at the moment. |
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Her husband finds it stressful caring for her and working. It has affected their relationship, but he'd find paid carers in their bedroom and bathroom intrusive.
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I think just to tell other people that, “If you want to get dressed up, you know, don't worry about it.” Just get everything as simple as possible and reduce yourself to a few simple garments, especially if you've got a carer who's not very good at putting clothes on you. I don't mind having my pants on inside out, but I do object to having them on back to front. So it's little things like that, which can be quite difficult when you're trying to explain to your husband that, “That's actually back to front.” And he says, “Well, does it matter?” “Yes, it does.” So little things like that can be a nuisance.
What effect has that, has it had any effect on your relationship?
Yes, I think it has, because he has found it quite stressful sometimes. He's holding down a full-time job. He also does a lot of research. Every evening he works on his research. So he's actually doing two jobs, really, in that sort of way. Then he's got to look after the house. He's got to look after me and do the cooking. I've just persuaded him that we need a help, cleaning lady, because he was regarding cobwebs as something that didn't need to be worried about. And we are having a cleaning lady in now. And he is getting quite good at doing things. It's just that to ask a man to do caring is quite hard sometimes, because they tend to do things in a brisk way, quite a quick way, and that can be a little bit too quick for somebody who's trying to move slowly and trying to recharge the batteries. So that can be a little bit frustrating for him, I think. So you just have to choose your moment and ask him when he's ready to be asked, and not when he's got his mind on something else. So that's the thing to do, really.
Would you ever consider getting carers from the Social Services?
Well, they have talked about that and they have offered us them, but we've said at the moment that we think we're coping. And my husband said he would never want anybody in to get me up in the mornings or put me to bed at night. He feels much happier doing that himself. He doesn't want people coming into the house, really, to intrude. I don't think he minds too much people coming during the day, when I can cope with them and see to them. But I think he'd very much resent people intruding into our bedroom and bathroom. I think that would be too intrusive, really. So at the moment he's quite ready to care for me in order to avoid that. When it gets too difficult no doubt he will tell me that he wants some more help. But he knows it is available if we want it. |
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She took a creative writing course because her arms weren't strong enough to do art or pottery, but now she really loves writing.
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The main thing I was able to carry on with was my creative writing, which I hadn't wanted to do. I wanted to do art and pottery and things like that, but I couldn't because of my lack of strength. So I went to creative writing classes and started writing short stories and things. And then one of the short stories was rather nice, so I wrote it into a novel. And then I thought I'd go on a course. So I went to the Open University and did a playwriting course for twelve weeks first of all, and then I did a full course on creative writing, which was good fun. And that kept me busy for the last nine months, really, and I've really enjoyed that very much indeed. And I'm going on to do another short course in the next few weeks on writing for the Internet, so that will hopefully improve my skills on the computer. So that should keep me happy. |
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She feels very positive about life and is upset by media images of MND. In future she may make a Living Will. She would not want resuscitation and would like a peaceful end.
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There was a programme on television the other day. I watched a little bit of it, I think it was Holby City, where they were saying there was a woman who wanted to go to Switzerland and commit suicide. And I looked at it and I thought, “Well, I don't feel like that at the moment. I don't recognise that feeling of desperation at all.” And I was wondering if perhaps I ought to be making plans for something like that. But whatever it is, at my stage of the disease or whatever, my brain is not in that sort of negative time frame, and at the moment I'm enjoying life. And it would seem an awful betrayal of all the people who are trying to work for me and do things for me to go and decide I want to commit suicide.
So I'm not in that way at the moment. In the future I wouldn't mind having a Living Will, and I think I will write one, just simply to say that if I need to be resuscitated I don't want to be, and that if I'm in a position where nothing can help me then they might as well give me a big dose of morphine rather than a small one and let things go easily. Because I don't see any point in sitting round for months in pain and agony. And I would hope that when I come to be in a terminal state, that they will make it as easy as possible for me. But I think it's very sad that people like Diane Pretty had to go to the Court of Human Rights and ask for help in that way. I thought that was disgraceful, really, that she couldn't be reassured that she would die a painless death. I thought that was very upsetting. But I don't really look ahead to that. I try to enjoy the way I'm feeling at the moment and stick to the positive kind of thing. |
