Motor Neurone Disease (MND)

So work's changed, can you tell me how your life's changed since?

That's a, that's a tricky one that one.

Well let's take, going out with friends?

Well I can't go to the bar anymore, I can't hold drinks. I still go out, they help me out anyway.

What, so you still go out with them?

Yeah. Yeah, every Friday I go out with them.

Okay, what about anything else that you do? Walking the dog?

Fishing.

Fishing?

Fishing I go there every Saturday, just to get away from everything, I go every Saturday. I bought a rod and that last week, so I go there every Saturday.

Is that something new you've started?

Yeah well I used to but, I sold all my kit years ago like, and now with my hands like, and my mate has set up and all that for me and cast out. And I just sit and watch the rod like and when I get a bite I'll, try and reel it in. It's just casting I can't do it because I'm worried I'm going to fall in the river because my balance is crap.

Right.

That's all, so I don't [laughs] I ain't tempting fate.

So tell me what you like about fishing?

It's just relaxing init? You've got no-one round you, you've got no traffic. Sit down in the chair, fish, fish, fishing [laughs], couple of beers. I'm alright then.
 

And I said the, the biggest thing was the fact that I wouldn't have much time with my grandsons. They're only 2 years old now. But I've had a year with them that I didn't think I'd have. A cracking summer, and really got to know them, you know. And it's that that I think is important. It's not wasting what's left. You know, it's limited, is the way of talking about it. It's not sort of terminal in terms of, 'It's tomorrow.' Your life is limited. So make the best of what you've got with every day. And I say, we spent the summer, we had a wonderful summer, fortunately the weather was good. It was tripped up a bit by me having to go into hospital for a couple of weeks with these blood clots. But apart from that, we hammered it to death. You know, we, we went everywhere. Jan - I'm a fisherman and of course one thing you can't do is, is get onto a riverbank, but my wife piles me in the car, gets the wheelchair out, wheels me over to the bank, parks me up, goes back and gets my tackle, helps me set the tackle up, and we spend the day fishing. You know, she reads a book and I sink some worms. And, you know, but it's not giving up, it's doing stuff, you know. 

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.
 

Well, there's not much [laughs] I can still do that I used to do. I had a very active life. I've been known to walk over forty miles in a day. I can now walk maybe three or four as long as I get plenty of breaks. But I do have to wear a neck, neck brace for that. And at the moment we're trying to work out how best that should be worn. I miss - I had a very active social life as well, and that has obviously been curtailed. I do go to the pub now and again and I'm well looked after by my friends and staff. And I do go to the golf club, where I'm looked after. But going out for dinner and things isn't as, isn't as fun as it used to be. We still do it, but only on a rare occasion.

You mentioned in the piece that you write that you need to sit down to drink when you're in the pub. Can you tell me about that?

Well, it, it got to the stage where I couldn't stand and lift a, a pint of beer. I had to sit. And so one of the local worthies in the village gave me his stool. He's in there, I have to say, a lot more than I am. And it gets to the stage now when I walk in that whoever's sitting on that stool is asked if they would kindly get up and allow me to sit there. It's become a bit of a joke, but that's good, I enjoy it. And if anybody took offence, I wouldn't mind, I'd go and sit somewhere else. But, no, it's accepted, the staff are good, yeah.
 

Are you still driving?

I am at the moment, yes. I won't be for long. It's my one vice that I have left [laughs]. I think I'm probably weeks away from needing an auto permanent-, you know, full time. On good days I can cope with the manual. On other days I don't drive the manual, I drive the auto.

Is driving something that's been quite important to you?

It's a passion. Driving isn't A to B, it never has been for me. I'm one of the, the rare people in the motor industry - I still love cars. I've been in it for years and yet I'm not cynical about them. I don't just view them as a means of, of making a profit or as a profit-making opportunity. I still love the things. I think that I'll always be passionate about cars. Some people out there will understand that. Other people will be mystified for it and be thinking, 'Why?' You either do or you don't. I think they're Marmite, aren't they? You love them or you hate them. I will drive as long as I can or certainly whilst I feel I can safely do so. I still do the odd track day, and I've noticed that I can't push the car as much as I used to, and it takes me longer to do and adjust to certain things. So I drive within my capabilities now, rather than to the extremities of what I felt I was capable of.

Are there other things, like particular passions or interests, that are being affected, or that aren't affected?

Oh, I love my football. It's, holding my scarf above my head and, and applauding have become quite difficult [laughs]. Perhaps I should change teams to a really unsuccessful one. I wouldn't need to applaud very often [laughs]. I haven't lost my sense of humour.
 

I used to go around the lanes, do a four or five miles circuit one day, next day, maybe up to about four miles, maybe a bit further. I've lived in the countryside all my life and I love the countryside and I miss getting out. After saying that, I've learnt to think differently. I see things through a different set of eyes. I am in a position where I can look out of the window and see something new every day, something that most ordinary people, by that I mean, people who are fit and well, well enough to get out and about. They are unable to observe the small changes that I see and I'm lucky in as much as I can see these changes. 

As an example, two years ago I watched a pair of sparrows, they were coming in to the garden from early spring. They ended up with three young and just by watching them I could tell each bird, by the different variations in the markings. If you think about a sparrow and you think they're one colour or one set of colours but there's variations in those colours that are particular to each individual bird. And this is the same with blackbirds and starlings, you name the bird and after a day or two, you could see one by the other each day, after two days, I will be able to tell you which is which, without needing to have any special markings.
 

I don't know why, but the French seem to have got it off to a fine art in terms of wheelchair access. And they're better, their wheelchair, their disabled parking spaces are really clearly marked as well, blue. Unlike in England, people don't tend to be outside bank telling machines or fish and chip shops, so they don't tend to be used by people who aren't disabled and think, 'Oh, I'm only going to be there for five minutes or three minutes. It won't matter.' And we drive past and we think, 'There's a disabled space' but it's full. And we come back, do the circuit, discover it's still full to somebody else, somebody different. 

In [town] there are three beside one of the banks and they're always full of people, once even with a bank manager, who should have known better, who had gone back to pick up something. The French even have some rather disturbing notices. They say, 'If you take my space, please take my disability', which is a kind of crude way of making the point. The reason why we need disabled spaces usually because is that I need a longer space. Because I come out of the back of the car, down the cattle ramp, I need to have about 2' to 3 metres behind the car for me to unload. Well, the ramp is about 5 feet and then I have to have the length of the wheelchair as well. And some of the disabled spaces are good because they're longer. Some places are terrible. You find yourselves unloading into the main road into disabled spaces where you back out into the main traffic, which is frightening.
 

Ann' My perspective then. Arrange, well, holidays, I think perhaps one of, I think you can be put off by airports because - and aeroplanes - because every airport and every aeroplane, company airline seem to have a different policy of handling people with disabilities. And Peter has a scooter which we, we can break into pieces and we can put on an airline. But every airline does it in a different way. And so you could easily, you could be put off, I think. But just keep going, because the end does justify [laughs] the upset I think. Because when you get there, and, and as I say sunshine's terribly helpful, that, that justifies it. But it can be stressful for the person who's having to organise it. It's quite...

Is travel insurance a, an issue?

Ann' Not with, if we said motor neurone it would be, if we say PLS it isn't. So I don't know. So we've not had a problem. 

Peter' No.

Ann' No, we were upfront right at the very beginning, and we've not had a problem with that, have we?

Peter' No.

Is that because you think people just don't know what it is, really?

Peter' [nods]

Ann' Well, I think, I think that is probably correct. But also they obviously have a list, because they say, 'Oh, I just need to refer to my list.' 

Peter' Yeah.

Ann' So whether it's on the list or whether they confuse it with something else, I don't know. But fortunately we've not had to claim on it [laughs] because Peter's been fine, haven't you? when we've been on holiday. So I think, but I just think in the last sort of four or five years - oh, or, well, even more recently than that, people are more aware of disabilities and more helpful. Airports have got their systems going much better than they used to be. And we were, we were in Africa recently and, and, you know, there they were marvellous. They've got the wheelchairs and they've got the Ambilift. And so it can be done. 

Peter' Mmm.

Ann' It's not always easy, but it can be done.
 

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.