Phil - Interview 28
More about me...
Phil first noticed that he was losing feeling in his legs over three years ago in 2003. At first it was assumed he had a cardiovascular problem, but tests came back negative. Later he tripped over his foot and broke a rib, and at this point the GP suspected a neurological condition. After some months of tests, motor neurone disease was diagnosed. He and his wife Janet felt the neurologist was excellent in the way he told them, but Phil was so shocked he found it hard to think about anything except the fact that he had a terminal illness. The neurologist said he would refer Phil to another neurologist who specialised in the condition, but somehow the paperwork got lost. After two months of waiting to hear and feeling desperate, Phil contacted the Motor Neurone Disease Association to ask for their help. Within 24 hours he was put in touch with the specialist and the local MND Association nurse, and things began to improve.
Phil was impressed that the specialist gave him a tape-recording of their consultation, so he could listen to it again. He was also glad the specialist told him he could book a summer holiday. Up till then he had felt there was no point planning anything in the future. Now he and Janet take the view that they want to make the best of whatever time they have left together, and try to put the condition to the back of their minds. At the same time, he feels it is important to be realistic and acknowledge what is happening to you so you can get the help and equipment you need. The staff at the specialist clinic have given excellent support and advice. As Phil's leg muscles have become weaker, he has had changes made in the bathroom, and bought himself a wheelchair from a catalogue. He has a car adapted so he can use his left foot to accelerate, and loves the freedom of driving.
His employers were very supportive, and enabled him to stay at work as long as he felt he could continue. He has recently stopped working but is still on sick pay from his company. Phil wants to ensure that he and Janet have enough income to live on now, but also that she has enough left once he has gone. He advises people to claim every benefit to which they are entitled, so as not to use up their pension more than they have to.
Phil and Janet have a very close relationship and draw on each other and their friends and family for support. Having a sense of humour has helped them deal with some of the more difficult aspects of the condition, and personal care. Phil feels it is vital for his wife to keep up her own interests and social life, as well as doing lots of things together. They feel closer to each other now than ever.
The first GP he saw assumed his symptoms were smoking-related. After a fall he was referred to a...
There was a delay between the diagnosis and seeing an MND specialist. All he could think about...
The problem was, whether I fell through the, the paperwork or not, I don't know, but I was expecting to be seen by him within a fortnight of that meeting. After two months I still hadn't heard anything. And after two months of being told you're terminally ill and nobody speaking to you, we just didn't know what to do. We'd gone through crying, through, not, I couldn't cope with anything that was more than a fortnight away. Nobody could sort of plan that in three weeks' time we'd go down to [daughter's] or up to [other daughter's] or whatever it might be. It was, 'Don't want to know. I'm not going to be here in three weeks. I'm terminally ill. Can't you understand that?' you know. And you become very whatsit. And literally I was in panic mode, because I had nobody I could contact, nobody I could talk to, I didn't know what the hell was going on. I went on the Internet and found the Motor Neurone Disease Association, rang their helpline, and within 24 hours I'd seen a specialist, I'd seen my motor neurone disease nurse in my local hospital, and all was well.
When we sat down and went through after he examined me, the whole of the interview was taped, so that I could take it away with me to refer to. Any questions we had were answered honestly. We were able then to start coming to terms with it a lot better. And I felt I had something of a future. Because one of the questions I asked, obviously, like all people who've been told they've got a terminal illness, is, 'How long have I got?' And of course nobody will tell you because they're not sure how long you've got because they're all different. But he did tell me I could book a holiday this year. So that was sort of positive, and that was a very good thing. So we came away from that with a) the knowledge that I wasn't the only one in the world, that there was an organisation that I could turn to that could help me, that the professionals in my area were extremely good in what they did. And this feeling of the end of the world having descended upon us didn't go away - I mean it was still there - but we were able to cope with it so much better in terms of it.
He wonders if giving up smoking after 50 years had anything to do with getting MND but his...
I don't know. I can't think of any specific thing that you could ally it to. I suppose you could say giving up smoking, maybe, but I wouldn't have thought so. One thing I'm very proud of is when I was told I was dying I didn't go back to smoking. I've kept a clean sheet. And my nurse at our practice, who was my conscience when I gave up smoking - I did it through her, and the patches and things - holds me up as a glowing example. But I gave up smoking because everybody needs a reason, and my reason for giving up smoking wasn't health, or my health, it was the health of my grandchildren. And I promised my daughters that on no way I would ever smoke in front of them while they were pregnant or my grandchildren. So I gave up when I knew they were pregnant. And I haven't had a cigarette since. And that was the 3rd of September 2004. So two years.
Engraved on your memory.
Two years in now [laughs]. Well, it is, it's a big thing. I smoked forty a day and I'd smoked since I was 10 years old in reality. So, you know, fifty years of smoking pretty much. But I do feel better for it [laughs]. But, yeah, that's the only thing. No, I don't, I don't think there was, you know, I wouldn't say there was anything that I would say was the cause of it. There's nothing there. I think everybody tries to find something and invent something. And in, part of the discussions with my specialist was that, you know, 'You might think, you know, this caused it or that's caused, but we don't know, you know, we just don't know. We don't know whether it's hereditary.' Footballers predominant in motor neurone, a lot of footballers are affected by it. And yet it can affect anybody, you know. I think the nicest thing that was said was that, 'It's not something you've done. You haven't done anything to cause this.' If I'd have got cancer then I could have said, 'Yeah, well, it's my smoking, you know. I deserve it, you know. I shouldn't have smoked all them fags, thrown all that money away in smoke. I jolly well deserve it.' But you can't, because you don't know, you know. You haven't done anything to deserve it. And it's no use turning round and saying, 'God, what have I done to deserve this?' or anything else. You've got it.
I think one of the things that is a strength to me, and has been throughout my life, is that I have had the ability to say, when I have a problem, 'Can I do something about it? Yes. Not a problem then. I can cure it. I can go out and do something positive to get rid of it or diminish it. Can I do something about it? No. Well, why worry? you know. It's not going to get me anywhere.' And I've lived my life with that belief. It's very difficult [laughs] not to worry, but I've actually lived it with that. And with motor neurone, 'Can I do something about it? Yes, I can. I can go and be part of the trials. I can do this. I can do positive things. I can raise money. You know, I have lots of skills I can use to help motor neurone disease, and, and be positive about it. Can I do anything about curing it? No.' You know.
He felt very vulnerable telling his employers but they were fantastic. He liked it when people...
So this was the point at which you told them that it was motor neurone?
It was the point at which I told them. And again, it was fairly traumatic when you're telling them, because these are people you've worked with, know you, and there are a lot of friends, in real terms. And it's very emotional again, that the things that you've done and are going to do have that impact on that situation. And again, you're becoming vulnerable, you know, because you're having to open up to people and tell them things, and you feel very vulnerable when you're doing it. And of course once you've told the company, you've got to tell your colleagues. And they take it differently.
And again there were sort of three sorts of reaction. Unclean, 'I don't want to catch it, so [coughs] I'm going to stay away from him.' Over-reaction in terms of sympathy. And then fortunately for me I worked with a lot of heavy goods vehicle drivers, who have a tremendous sense of humour. And it was just business as usual. And that did me the world of good, because they kept me straight, they kept me narrow. And that's what you want. It's business as usual. You don't want people to make exceptions for you, particularly - I didn't.
His OT is good at forecasting what equipment he'll need before he realises it. It's reassuring to...
Driving was everything to him. He had an independent assessment of his driving and got the car...
We then went out, and they had me driving a normal car, if you like, but this car was actually fitted with all sorts of extras. So once they'd established where I was in terms of driving a normal car, we then changed it to a hand accelerator and brake. We then changed it to a left-handed accelerator pedal with an automatic transmission, which is what I ended up with. That's what I needed, because my left leg was still okay but my right leg was shutting down. So I had my car modified so that I could drive with an automatic with a left-hand accelerator. But that wasn't immediately. Obviously I had the assessment done, then I got the results of the assessment back and forwarded it to the DVLA. So the DVLA, rather than having to go to my consultant or doctor, who, I didn't know whether they would say, 'No, he can't drive any more' and that would be it without a licence, and that would have terrified me, or they would say, 'No, he's okay'. You don't know. So I actually pre-empted it by having the assessment done. And I knew what was in the assessment, so I was quite happy to forward that to the DVLA. And I paid for it myself, it cost me '80 to have done.
The DVLA, because it comes from an accredited source that they're used to seeing, accepted that, that I could carry on driving, providing I altered my licence to one that was an adapted accelerator on an automatic vehicle. And that's what my licence now reads, that I can drive a, a vehicle, providing it is an automatic with an adapted accelerator. And the adapted accelerator can either be hand-operated or foot-operated. I then had my car modified so that it's got now two accelerator pedals, although you wouldn't notice it. And when my wife drives, it's like a normal automatic. You've got the brake pedal in the middle and the accelerator on the right-hand side. When I drive, we, there's another accelerator pedal, which is under the dash. You push that down. If you push that one down, the other one goes up, so you haven't got two accelerator pedals sort of in the floor pan, and then I can drive the car. And then when I've finished driving it and she wants to drive it, she just pushes her pedal down and the other one goes up out the way. A tremendous thing. But you don't know these things are available unless you make an effort to actually go out and find them.
And that kept me driving. And it's absolutely wonderful, because it gives you your independence. I'm pushed around in wheelchairs, I'm on sticks and what have you to move, and move about, but when I sit in that driving seat, because I can still, my left leg is still reasonably good and I've still got the necessary movement, I'm as good as everybody else. I can still drive safely and I’ve still got that independence there. And that’s important. It’s all about quality, it’s about independence and I suppose about vulnerability. You know, it stops you being vulnerable again. Because I work in the country, it means that I would have had to, if I wanted to continue working at that time, I would have had to have people take me to work and bring me home. Because of - yes, there’s a bus service, but it’s once every two hours, you know, which is no good for going to, to work and coming back from work. And it gives you that independence, you can still be - and as I say, it really makes the difference in your life, because I’ve driven all my life. Driving was a massive part of it in the latter years, when I gave up real employment as I call it, and sort of took a step back from business. And I, I had a wonderful job, a job that, you know, it was more hobby than, than work, although I got paid for it, which was demonstrating very expensive motor cars to people and taking them through the latest technology. Because I’ve always been interested in it, it was not a hardship. It, it’s, you know, my interest. It’s like having a hobby and doing it for a living. So it, you know, it’s all those things that, that make it really worthwhile.
At first you can't take in any information. It is a good idea to have another appointment within...
Going to support group meetings has helped him come to terms with MND. The emotional support and...
So it's not, you know, planning from now until, you know, I'm lying in a bed totally paralysed with somebody working me on a respirator or something, you know. Leave it, just concentrate on today, but accept the fact that you've got to live today, and become involved. Get involved with the Motor Neurone Association. A tremendous amount of goodwill and support comes from that, knowledge. The people in it are people who have nursed people who've suffered from motor neurone disease, and then carried on to become visitors of the association. It could be parents or loved ones that they've lost, but they want to put something back through the association. There's a tremendous amount of support there. And if you go to carers' meetings it's not about medical - it's about fun, it's about how you enjoy yourself, making sure, you know, nice relaxing massage, you know, all sorts of things. You know, knowledge. You're not on your own. Other people have been there. Why travel the same road and map it out when somebody's already been down it and made it a motorway? So, you know, you can whip down, you can bypass all the hurdles, because people have already done them for you. And then you can start finding hurdles further down that you can attack and, and progress on with.
But I would advise people really to get involved, you know, get out there, find out what's available both in your local community - we're members of the local carers' association, we're members of the Motor Neurone Disease Association and the Oxford branch of the carers' association, and we get involved in everything that we can, because it helps certainly me come to terms with what's going on within me. Secondly I can feel that I'm helping other people as well as myself. And it gives Janet the fact that - my wife - that she's not isolated. There are people she can turn to, people she can talk to that understand and know what, what she's going through. And that's very important.
And as I say, if I sort of sum up with anything it would be, 'Get involved, embrace it, get involved, become members of the carers' associations'. They're so much help, they really are. And I've never belonged to anything like that in my life, neither has Janet. We've always gone our own way and done our own thing. But on this you need help, you can't cope with it on your own. It's too big. There's too many things that you need, and you need to know about. And if you try to do it independently you'll miss out on so much.
He knew he could no longer demonstrate cars. He worried how his employers would react and how he...
What would have been your anxiety about if the GP had put motor neurone disease? What would that have meant?
Well, if the company had seen it and said, 'Hang on, you've got a terminal illness' you know, I don't know how they would have reacted, you know. Would they have said, you know, 'We're going to terminate you from now' sort of thing, or, 'You...'? And particularly when I was in a job that I loved, which was demonstrating motor vehicles. And you can't demonstrate a motor vehicle if you can't drive it. And of course I couldn't drive. And I'd been doing things like training while this diagnosis had been going on, and I was training other people and I'd got other skills that the company could use.
Little things can still trigger great sadness, especially thinking about his grandchildren, but...
I don't think it's part of the condition that you become emotional. I think it's a reaction to the condition. And, yes, I can be very laughable, and I'll make jokes and - because that's another defence against it. And you can get very surly as well. You know, 'Don't you realise that's a disabled space?' you know, 'Parking your bloody car there.' And it's a reaction to it, you know. And you compensate for it, because you don't want to happen what's happening to you, and you compensate for it by either reacting emotionally, you know, because you can't do things, you're not going to be able to do things. I went out and bought everything I'd ever want to give my grandsons, and went and bought it in a day, you know. They got stuff that's going to last until they're bloody teenagers [coughs] that I would have bought, because that's part of what granddads did for boys. And I'm not going to be there, you know.
Fishing rods, knives, all sorts of things, you know, cranky stuff. But it's a reaction to it. And it's worse at the beginning. When you're first told, you, you think somebody's just told you you're going to die Saturday. You know, 'It's Friday night now, so Saturday you're not going to be here.' End of story, you know - don't need to think any further than that. And of course it's not. You are going to be around for a while, you know. Nobody can tell you how long, or they won't tell you how long, I'm not sure which. Probably because they don't. The disease affects people in different ways, it's not all the same for everybody. And again, I think part of that is how your make-up is. If you're a fighter you're going to last longer than somebody that gives in to it or somebody that refuses to accept it. And I think that's one of the big things. Accept it, embrace it. Once you've done that - and that's hard, it really is hard. I found it very difficult. But once I'd embraced the fact that I'd got it, I could then start compensating for it, with equipment.
Means-testing is unfair. He'll miss years of pension, and worries about his wife's financial...
What are the other means-tested things that you?
The other means-tested things that you come up against are allowances and, etcetera, living allowances and things like that. Anything that requires you to be below - because I get pensions then I'm not entitled to those sorts of things, and what have you. But it's all right, you know, you can sit there and probably people listen to you and say, 'Well, he's only got a year to live. What's he bloody worried about?' My wife's going to be here for another thirty years. You know, that money's hers, and she's got to live on that money for the next thirty years. You know, that's our future, not my future - our future, and it was always deemed to be our future. And I can't waste it, you know, because I'm coming, you know, in the last sort of year or so of, of what I've got.
What about equipment and so on? Have you had to pay for other bits of equipment yourself? Or have they been provided?
General equipment that looks after me within the confines of the house has been provided, which is very good. No fault there, brilliant. In terms of mobility, I have a Motability car. I bought a scooter, the electric scooter things, off the Internet second-hand. And I got a wheelchair that we bought from Argos, which is the best place to go for them. They're brilliant quality and '200 cheaper than anywhere else. Go to Argos. And I was told that by a girl at the Motability shop, and I won't say who [laughs]. But brilliant value. We wanted a, a lightweight wheelchair that my wife could manage, particularly as we were going abroad, that we could take on the plane and what have you. And we went to Argos and got it on recommendation. Absolutely superb. They do a wonderful range of disability products. So look in your Argos catalogue.
I never knew that. That's amazing.
No. It's phenomenal, the products they do and, and the value. You, I mean if you go to - one of the things I, I found was that, not everywhere, but the majority of places selling disability products, particularly on the Internet, which is where you would get the widest choice, they never tell you what the price is. Every time we've rung up for a quote for something, the first question they ask me is, 'Do you have a whatsit, a grant?' or whatever it is, you know. 'No, I'm paying for it myself.' And the price immediately rockets, because you go outside of the two and a half or three thousand, or whatever it is might be, the, the grant situation for something. I mean we started with a, a wet room, that was '800 for the tray and the sides. To install it in my bathroom, by the time we’d finished, was £6,000. You know, we had no comprehension. Obviously we, we can’t afford that sort of money, to go ahead. But that’s the sort of thing. If you go and look on the Internet for a, a chair, or a scooter, you will get a price that is their recommended retail price, which is far away and above, but mostly no prices at all. “Contact us.” Then they look at your background, the registration number of your car, what sort of house you live in, you know. And I, I honestly, that’s my honest belief, that it’s priced according to your ability to pay, not to the product. And I think the more Argoses that get involved will bring the price down. And I’ve even seen it on shopping channels on the television that they do similar products. Because it’s so expensive to be disabled.
It has brought him and his wife even closer together. They have both had to adjust to changing...
Ha, do you think it's changed your relationship together in any way?
Very much so. I think it's brought us together more. Although we were very close, it's certainly brought us together. The reliability on her and the responsibility on her has changed dramatically. Where I would have been, if you like, in the old-fashioned term head of the household, now she's the head of the household and really is having to make, the decisions that we would have either made jointly or I would have made she now makes independently. Because I can't be with her all the time, and because I'm trying to transfer ownership to her so that it doesn't come as a shock at the end. So the, you know, things like where our money is, where the pensions are, and all those financial sides of things we've transferred across. The decision-making on things in the house in terms of decorating or choosing things are, are becoming more Janet's than joint. And she's very uncomfortable with it at times. So it's a transition thing, it's not sort of just a, a wall if you like goes up. It's got to be a transition, you've got to start doing it and getting the other person used to, you know, taking those things and the changing role. And, yes, you do become somewhat of a child in terms of the relationship, because obviously as you progress so the care becomes more intimate in terms of your needs. And you have to be comfortable with that, both of you have to be comfortable with that, and the fact that that is going to progress. And again it's a vulnerable thing, you know.
He and his wife have had a packed summer. She takes him fishing in his wheelchair, and helps him...
When I - many, many years ago, when my children were little, I built a fort for my nephew. And my two daughters never ever forgave me. And the one thing they insisted that, one wanted a farm for her son, and the other one wanted a fort identical to the fort I'd built for my nephew for my other son. And with the limitations on what I can do, we have made them those for Christmas this year. And what would normally take a day, or an hour, takes a day. What takes a day, takes two weeks to do. Because you're very limited in terms of stamina as well as everything else. And you get on with it. We needed ramps for my wheelchairs and things, so we built them. I designed them. I've got a little workshop and I set the equipment up. I couldn't use it, but my wife can for me. So I tell her what to do and she does it, and we built the ramps for ourselves, you know. And it's being independent, you know. We could have had somebody do it or, you know, they would have come from the local, from the occupational therapist and done it. But it was so much more satisfaction in doing it yourself.