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Penny - Interview 11

Age at interview: 59
Age at diagnosis: 56
Brief Outline: Penny was diagnosed three years ago (2003) with ALS, after having arm weakness, pains and coughing fits for three years. The condition has progressed quite slowly so far.
Background: Penny is a retired primary school headteacher, married with 2 adult children. Ethnic background/nationality: White British.

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Penny's first symptoms started appearing 6 years ago (in 2000), when she started to find it difficult to lift things on and off shelves. Her hands started to shake, and she began having coughing and choking fits. She decided to retire early.

Initially her GP diagnosed stress, but her symptoms continued to worsen. After three years she was referred to a neurologist, and had tests as an out-patient. She then received a letter asking her to come for an appointment in a different hospital. She was shocked to see that the letter was signed by the MND co-ordinator, although no-one had yet told her the diagnosis. Having previously decided not to look at information on the internet, that weekend she and her husband looked for information on motor neurone disease, so when she went for the appointment to be told her diagnosis she had already found out quite a lot. Although it was a mistake for the MND co-ordinator to sign the letter, in fact it gave her a chance to come to terms with it.

Penny found the information from the MND Association which the hospital gave her really helpful. At first she did not want to meet people from the MND Association but eventually started going to meetings, and has found it really helpful to meet others with the condition.

She has not felt angry about what is happening to her, but has felt shock, disappointment and frustration at not being able to do things she used to take for granted. Now she feels resigned to it and is determined to get the most out of life while she can, especially travelling. It helps to have a loving and supportive family.

Originally she felt a bit overwhelmed by the amount of attention from district nurses, therapists and social services and asked for fewer visits, but now she feels it has gone to the other extreme. Recently she has got back in touch with social services to get advice about installing a lift, as she is finding stairs difficult. She sometimes feels care is not always as well co-ordinated as it could be.

Penny takes a half dose of riluzole, as she finds a whole dose knocks her out. She uses a mobility scooter, and is still able to drive an automatic car. She has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' stating that she does not want any invasive intervention. For example she resisted having a PEG, which the speech therapist felt she needed as she was losing weight at the time. Her message to professionals is to work with the patient to identify solutions together, rather than just telling patients what they think they need. She would prefer to die at home or in the local hospice, where she already goes for some day visits. 

 

Most people were very supportive but her mother was angry at the diagnosis, and one of her...

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Most people were shocked. Well, everybody was shocked. A lot of people were as ignorant as I was, so you had to kind of explain at the same time as tell people. I got loads of kind of lovely letters and cards from people. That was lovely. A couple of couples that we've been friendly with, we had quite a long discussion about spirituality and things that we would never have touched on unless, you know, this diagnosis has happened. Both my children responded well, as did my two stepchildren, and have continued to be kind of loving and practical, which is what I need really. 

I have a very close friend, who is younger than me by about ten years, and I've helped her a lot through a difficult time with her marriage. And she couldn't cope with it, because I was now the one that needed the care, and yet I'd been the helper. And that's been hard for her, and hard for me really. But we've kind of sorted it through now and we're back on an even keel. My mother couldn't cope with it at all. She was angry. She had all the anger that hasn't hit me. So she was cross with me, she was cross with MND, she was cross with the Association because they hadn't got a cure. And that was quite difficult and we had to have quite a few words with, I ended up saying, 'Look, you've got to accept, mum, it's the quality of life now that matters to me, not the quantity'. And I guess the hardest thing for her was the fact that her daughter was going to die before her. But then, bless her, last year she got kidney cancer, was ill for about two months and died. So it worked out the right way round in the end. But she was so angry. 

Other people. My husband is a brick. He's far better at coping with me being ill than I would be at him being ill. And I think like me he's not been angry, but obviously we have bad moments and we have weepy moments. And they tend to be first thing in the morning before we've got ourselves sorted. But then we find something silly to laugh about and get on with the rest of the day. Kids help, I think they worry, but they try, they kind of come and, my daughter lives in London, so I don't see as much of her as I'd like to. But we're on the phone most days and she's always practical, you know. My son lives in [a nearby town], in the town. And he comes out and is quite a strength really, and will do helpful things about the house for us as well. So, yes, it's been a really good reaction from most people. I have one funny one. I bumped into an ex-neighbour in the local supermarket about three or four months after being diagnosed. And 'Oh, hello, how are you, how are you, how are you?' And I said, 'Oh, I'm not so bad, but sadly I've been diagnosed with motor neurone disease'. 'Oh, dear. Apart from that, are you well?' And so obviously she had absolutely no idea what MND was. But that was quite a funny one. But most people know it's something horrid but are not quite sure what it is.

 
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She was advised to have a PEG because of weight loss. She decided not to have one and feels that...

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So I was referred to the local hospital to see the speech therapist and the occupational therapist. The speech therapist and the rehabilitation consultant were talking about me having a PEG because of my weight loss. I felt very strongly that I didn't want a PEG at this time, and fortunately my MND consultant agreed with me. I think I've been proven right, because three years later I've still not lost any more weight. So that was a good thing. And again the speech therapist, I can contact her when and if I need help.

Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?

I suppose good examples are people saying, you know, 'We're here to help you in the way that you need'. I've appreciated that more than the example of, 'Well, you're a very thin person. Therefore I think you need a PEG'. And that was really quite frightening. Because although yes I am a very thin person and that is one of the troubles with MND, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, 'Let's, let's work together about finding what solutions you need' as opposed to, 'This is what I think you need'. That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.

 

At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and...

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It was in the autumn of 2000. I was working as a headteacher of a primary school in the county. And I was finding it more and more difficult to put the heavy box files I had on the shelves in my office. I put it down to kind of getting weaker in the menopause I suppose. But also at the same time I developed a shake. In the mornings my hands would shake and really throughout the day. And also I was getting quite a few coughing and choking fits. And in my mind I put that down to an allergy to dairy products. So I was trying to be realistic and think what it could be. But of course nothing serious entered my mind at that time. 

I was also getting a bit fed up with being a head teacher. I'd been it for ten years and I loved the job, I loved the children and the adults, but I was getting fed up with the government targets. So with my husband being fifteen years older than me, we decided I'd take early retirement, which I did in 2001. And I started working part-time supporting other schools. But by then my symptoms were getting worse. I was getting a lot of cramp at night. I had quite a lot of pain in my neck and shoulders. I was losing weight, and my arms were continuing to get weaker. I went to see my GP and he put it down to stress. This was understandable because a close family member had developed a mental illness at the time and there was a lot of stress in our family. But as the time went on his symptoms were being well managed, but my symptoms were increasing. 

 

She recently heard about through-floor lifts which might suit her house better than a stair lift. You have to be determined to find out what's available and it's expensive.

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As long as I know the person to go to, I think that's half the trouble. But again that's quite useful, because I'll ring the MND clinic and I'll say, 'I'm thinking, well, beginning to think about lifts. Who should I talk to?' But it is a question really of trying to find things out for yourself, I think. I hadn't even heard of these through-floor lifts until recently. And I don't know how I picked up that there's a possibility. And we were thinking stairlifts and the Social Services lady said, 'It's going to cost a lot because you've got a stair with a bend in it'. And I thought, 'I don't want to spend a lot of money if two months later I'm at a situation where I can't transfer from the stairlift to the next chair'. And then I suddenly thought about these through-floor lifts. And I thought perhaps you had to live in a palace to have a big staircase that could go up and down. But the coordinator at the clinic said, 'No. They cut a hole out of your ceiling and you go up and down'. So I thought, 'Well, our house can probably cope with one of those'. And somebody's coming out this week from Social Services to advise me about it, and we'll follow it up from there. So you have to stick at it. And I feel very sorry for people who don't, who are too ill to stick at it, or who don't have family who will stick at it for them. Because you do have to, not fight exactly, but you have to be determined, yes.

Persistent.

Yes.

And that's something it's bad enough dealing with the illness.

Yes.

Never mind.

And also I suppose in some ways, I mean we're in the fortunate position that we're financially secure. We're not rich, but we've got two pensions coming in, grown-up children off our hands and we own the house. If I had to wait for a Social Services grant for these things, I think I probably would have popped my clogs before it came through. I think that is a real concern for a lot of people with MND.
 
 

The personal information folder from the MND Association was very useful. At first she didn't...

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At the time the MND Coordinator in the hospital put us in, gave me a telephone number to contact the local association if I wanted support, and also gave me a personal file which the MND Association had put together to help people who were first diagnosed. That personal file was actually really helpful, that you could dip into it. And over the next few months I added sections to it as I found I wanted to know more. I didn't want to contact the local association initially. I wanted to go away and lick my wounds. And we did have a holiday in Tuscany already booked, which was great. It was just what we needed. But after about a month I did ring the contact number of the local MND Association. It turned out, totally coincidentally, that I knew her, because she'd been my daughter's singing teacher. And we started to go to the meetings. I think probably the December meeting was the first meeting that we went to. We both summoned up our courage and went to a meeting. And it took two or three meetings I suppose really to begin to feel comfortable meeting other people with MND, realising that it strikes everybody so differently and seeing somebody does not necessarily mean that's how you're going to be in a few months' time. But we do appreciate the support we get from the group meetings, both my husband as a carer, meeting other carers, and myself. And the information that we get, yes, we find that really helpful. So we go regularly now to the meetings.

So actually going along to a local, getting some local support?

Yes, yes.

You said you summoned up the courage to go along. Tell me about how you were feeling about going beforehand.

Very mixed really. Feeling that we ought to give it a go. I suppose a big thing that I've had to move from is having been a head and having also kind of helped in a voluntary capacity at various places before, I've tended to be the helper. Now I've had to move to the situation where I'm the person being helped. And I think perhaps that was part and parcel of the emotional getting ready for these meetings. A very jolly chap was chair at the time and he immediately made us feel at ease by just treating us like everybody else. And I think that's one of the big advantages of the meeting. You are just an ordinary person there, you're not somebody special. But, yes, it was the hurdle of getting over meeting other people with MND. Which I know and I respect that some people just don't ever want to do. But I have found it helpful rather than unhelpful.

What happened at the meeting?

The first meeting we went to, the speaker, because there's usually a speaker, happened to be somebody from the head office of the Association, who was talking about Association visitors. And she did it in a very light-hearted quiz way and a bit like Who Wants to be a Millionaire. So although [my husband] and I, sorry, my husband and I didn't know anything about the visitors at the time, we just joined in with a group and it was good fun. And there was coffee and chat and people would say, you know, 'Nice to welcome you, you know. Why are you here? Which one of you's got MND?' because it wasn't quite so obvious then. And, you know, just pleasant really, just friendly company. And that was great.
 
 

Using an electric scooter out of doors was hard to accept but it gives her more freedom. At home...

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About a year ago I started walking with a walking stick. But the trouble with a walking stick is, when you've got weak arms the stick becomes quite heavy to lift. And so I could only walk fairly short distances with a stick. I could walk longer distances if I held on to my husband's arms. But now I find that my breathing is shallower as well and I really can't walk long distances. So I began to think about this mobility scooter. And one of the girls that I know through the MS group had got one. And I borrowed hers for a few weeks and bombed around in it and found it quite useful. So we bought one. And, yes, it's another emotional thing you've got to get over. You're, you know, sitting there in one of these old lady's scooters as we call them. But it does open up areas for me that had closed down. So it's worth doing. We went for quite a nice long walk round a lake in Northern Ireland last week, which I wouldn't have got at all without a scooter. It does make you realise how poor a lot of towns and villages are at coping with people with kind of physical needs, because their pavements are pretty atrocious. But it is a big help. And we've got a little one that could get in and out of the car fairly easily.

Have you had to make any adaptations to the house yet?

Not really, no. As I say the stairs are now getting difficult. But we're lucky in that we've got a separate shower. So I can get in and out of the shower. I can get into a bath, but I can't get out of a bath. So I occasionally have a bath, when my husband's feeling fit and healthy and he can yank me out. I've just bought myself a kettle tipper, which is an amazing invention. And it means that again I can now make cups of tea and coffee, which I couldn't do because I couldn't lift the kettle up to pour the water into the cup. I am really pretty limited in the kitchen these days in what I can do with my weak arms. So we've bought a steamer, because then you don't have to drain the water out of the saucepan. But I can't do a lot in the kitchen. We tend to cook together, with me being the Gordon Ramsay and telling him what to do.

 

The MND specialist clinic feels well coordinated but not some other aspects of care. She'd like a...

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Parts of it feels coordinated. When I go to the MND clinic, that feels coordinated. But because we live in a different part of the county from where the clinic is based, the rehabilitation section is not through the clinic, it's through this other, and that didn't seem coordinated, no. The bit with the GP and the district nurse, that seemed quite coordinated. My GP has been very good and very helpful and very supportive, and actually came out and had a discussion with my husband and myself and the local MND regional coordinator about what kind of support he should offer us, because I think I was his first patient with MND, which I suppose happens a lot of times. 

But interestingly I think the coordination of the services has got a long way to go. My husband and I are currently involved with some meetings with the ambulance service that were set up by the regional coordinator in the district to try and ensure better provision for people with motor neurone disease. And there's the opportunity for ever such a lot more to happen than is currently happening. So fingers crossed that as these things are developing, then working together will actually help people with motor neurone disease. For instance they're hoping that if somebody rings 999 and you can get an emergency practitioner to come to the house, then a breathing problem can be sorted without being whisked off to hospital. Or if it's a difficulty with a PEG feeding tube, that can be sorted without being whisked off to hospital. And if that could happen, that would be amazing. So fingers crossed that that kind of coordination will improve. It's a bit hit and miss at the moment.

Are there any services that you think would have been good to have for people with MND that don't exist at the moment?

Well, I'm lucky with this massage. I think that I'm just fortunate in living near a hospice that actually provides this massage. But I think that something of that type of therapy is really very helpful. It makes you feel so much like an ordinary human being again by the time you come out, and it does help keep the stiffness at bay. My consultant told me that one of the advantages of MND is that there was no pain. He was wrong. There is pain involved as far as I'm concerned. And certainly other people I've spoken to have got pain. And, yes, a massage service would be great, I think. Again, the Macmillan nurses are lovely and very helpful, but they're still very geared towards cancer. And that's understandable, but my problems aren't the same as cancer patients. So perhaps widening the role or having people who are particularly for illnesses other than cancer would be helpful. I guess a one-stop person. If I've got a query, I sometimes think, 'Who do I go to for this?' If I had one person that I could say, 'Right, you're my point of contact and I'll ring you. And you can say, 'Go to your GP, go to your district nurse, go to whoever',' that would be helpful. I can get that kind of advice, but I sometimes have to ring around to find out who's going to give it to me. So a one-point contact would be really helpful, yes.

 

At first Penny chose a regular phone call from the district nurses, rather than visits, but then...

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When I was first diagnosed, it all came a bit fast and furious. Not from the hospital and the consultant, because I've seen him regularly every three months and that's fine. So I usually go in with a little list of things I want to talk about and that works well. But after the diagnosis, then I was referred to the district nurses, and they came. And that was okay to begin with. But really I didn't need regular visits from them, because at the time I didn't need extra support. So it then went down to a phone call. And now I think it's been reorganised, it's gone to nothing. So I've gone from one extreme to the other. I quite liked it when I used to have the regular phone call about every two months, because it meant I could tap into them again more easily. So I think that's gone downhill a bit, really, the district nurse system. The other thing was that I was referred to rehabilitation services. Now I got that letter probably about two months after diagnosis, and the word rehabilitation just made me flip. I was furious, I'm still angry now thinking about it. But I know it's the term that they use for accessing different services, but in my situation, rehabilitation was not the right word to use. 

So I was referred to the local hospital to see the physio, the speech therapist and the occupational therapist. The speech therapist and the rehabilitation consultant were talking about me having a PEG because of my weight loss. I felt very strongly that I didn't want a PEG at this time, and fortunately my MND consultant agreed with me. I think I've been proven right, because three years later I've still not lost any more weight. So that was a good thing. And again the speech therapist, I can contact her when and if I need help. 

The physiotherapist I used to go and see occasionally, because of her timetabling schedule. So really it wasn't an awful lot of help. And then she retired, and I don't think it's been replaced. So I don't go there any more. The OT at the time, it was funny because I'd been a volunteer in the Occupational Therapies department, so I went along there and had a chat and that was that. But more recently I have been back to the OT department, and there's a new OT there, and she's been very helpful. And I've been buying some, various dressing aids from her, and also starting to think about lifts and stairlifts. And that's put me back in contact with the local Social Services people, who are coming out this week, actually, to talk about stairlifts or through-the-floor lifts, because I'm finding the stairs hard now. So, yes, it's a bit hit and miss. It was a bit all too much to begin with, and now it's almost like, 'Where are they?' I think I've kind of sent them away a bit too far.

 

She'd rather professionals admitted knowing little about MND. She prefers it when staff work with...

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I guess one of the things that's hit me the hardest is the fact that a lot of health professionals know very little about MND. And I understand totally that they do know very little about MND, but in some ways it would be helpful if they said so. Sometimes I feel I'm talking to somebody who pretends they know a lot more, and in actual fact I realise I'm the expert, not them. I'm the expert through necessity. But I think honesty really would be helpful. You know, 'I don't know about it, but I'll find out about it for you' would be much better than pretending they know about it. Other things for professionals. I don't know, I really don't know.

Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?

I suppose good examples are people saying, 'We're here to help you in the way that you need.' I've appreciated that more than the example of, 'Well, you're a very thin person. Therefore I think you need a PEG.' And that was really quite frightening. Because although, yes, I am a very thin person and that is one of the troubles with MND, I actually, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, it's, 'Let's work together about finding what solutions you need' as opposed to, 'This is what I think you need.' That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.

 

She loves travelling all over the world, but travel insurance costs a lot. She does not book too...

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Travel insurance costs an arm and a leg. Because as soon as you're diagnosed with a terminal illness, despite the fact you say you've got no prognosis, some companies just don't want to touch you. I used to have an annual travel insurance and I rang them up and explained the situation and they said, 'Oh, that's fine. We'll continue to insure you, but nothing to do with MND.' So I said, 'Well, that's no good to me. Because if I fall over and break a leg, I'll say I fell over and broke a leg, and you'll say, 'You did it because you had MND'.' So I have to take out expensive travel insurance. And the MND Association have been very helpful and they provide people who will cover you. 

I'd always, there were a couple of must-see places that I wanted to get to. And I got to one of them, I got to the Taj Mahal about five or six months after we were diagnosed, and that was wonderful, just wonderful. But I wouldn't be able to do that kind of holiday now. The other one I'm having to give up on, because I did want to see Machu Picchu and I don't think that that rarefied atmosphere is good for people with breathing difficulties and poor legs. But we've managed to get most of the, you know, we've managed to have regular holidays.

Last year we went to the States for three weeks. I'd lived there as a foreign exchange student for a year and I'd got lots of friends out there still. And my husband had never met the family that I'd lived with. So we had a week in Virginia, a week in Oklahoma, where I'd lived, and a week in Arizona and the Grand Canyon. And that was great. But all the flights put together, including the ones to and from London, didn't cost as much as the travel insurance for the two of us. So you do have to think very carefully about the cost of your holidays. This year for the first time we cruised, because my legs are getting weaker and I can't walk very far. So we went on a cruise up the Norwegian Fjords to the Land of the Midnight Sun. And it was different, but it was lovely, you know, we enjoyed it. And we've just come back from a holiday in Ireland. And we took the car over so that we could put my mobility scooter in the back and have access to that. So, yes, we're making changes, but we're still determined to have time away.

Where's the next holiday?

I don't know, I don't know. I haven't got one yet. I try not to book too far in advance, because I want to be pretty sure how well I'm going to be before I go so. Probably nothing till the New Year now.

 

A Living Will (ADRT) and advanced care planning makes her wishes clear even if she can no longer express them. She wants the best quality of life she can without invasive intervention, and would consider a hospice.

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The Living Will (ADRT), that was important to me, to write a Living Will (ADRT), so that if I am unable to express myself, then my desires are quite clear. And it should be a bit of a safeguard for my husband, so that he's not having to battle independently. Yes, those kind of things I think are taking charge of it.

Setting up a Living Will (ADRT), how do you do that?

I spoke to the Macmillan nurse at the clinic, because when I brought it up to the consultant he said, 'Oh, the Macmillan nurse will talk to you about that.' Bless her, apparently it was the first time she had to talk to anybody about it, she confessed afterwards. But she was very good and she gave me the format that the MND Association recommend. So we looked through that carefully and it seemed to be fine as far as my wishes were concerned. So I then took it to my GP, discussed it with him and signed it in front of him and a witness. So he has a copy of it, the consultant has a copy of it and we have one here. And I'm becoming aware that with the introduction of the Mental Capacity Act, I think it's next year, that it won't actually be clear-cut enough and I'm going to have to go back and revise it. But that's something I can do quite easily now I've gone through the process of what I want and what I don't want. And basically I'm saying I don't want any invasive intervention. I want the best quality of life I can have naturally, but I don't want anything invasive.

Have you, while we're talking about that, have you thought about, any other thoughts about the future in terms of care in a hospice?

Yes. I've been going regularly to the hospice for the last couple of years since the district nurse who came out initially recommended that I might be interested in going for massage there. And there's this very small hospice in our town that does day care and also has about four beds, I think. And most weeks I go for an aromatherapy massage, which is lovely. It just keeps the stiffness at bay a bit and is very soothing and relaxing. And having been there, I would feel quite happy to spend time at the hospice for short periods of time to give my husband some relief if it's necessary. And also if I can't die in my own home, I would be second happy to die at the hospice. I feel very strongly I don't want to go to hospital, and I want to avoid that at all costs. Yes... yes the hospice would be fine. And home would be best.

Footnote' As a result of changes to the law in this area under the Mental Health Capacity Act 2005, available documentation is being reviewed both within the MND Assocation and across specialist palliative care services.
 
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