Leisure, holidays and travel with MND

How far leisure activities are affected by MND of course depends on the kind of symptoms each person has and how quickly they progress. Many people could still pursue their existing interests – for example, a man whose speech was unaffected still enjoyed regular games of golf with friends and a man with limited arm and leg movement continued to sing in a choir. Some found ways to continue favourite hobbies or activities despite physical difficulties, sometimes with the help of family and friends. A few people said they were not happy about taking to a wheelchair but were glad of the freedom it gave them to move around more easily and go on outings.

He still goes out with friends every Friday, although he can’t hold a glass any more. One of his…

Age at interview 24

Gender Male

Age at diagnosis 23

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So works 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.

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He and his wife have had a packed summer. She takes him fishing in his wheelchair, and helps him…

Age at interview 60

Gender Male

Age at diagnosis 59

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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.

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He can still go on walks but not as long as he used to. He still goes to his local pub sometimes…

Age at interview 59

Gender Male

Age at diagnosis 55

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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.

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People continued to take part in a range of other activities, including going to the gym, painting, music, cookery, creative writing, community volunteering and fund-raising, eating out, going to the theatre, local history societies and adult education courses. Many stressed how important they felt it was to keep active. At the same time, however, many had to give up things they enjoyed doing, and said how much they missed certain activities. Gardening and walking were often mentioned, but also various forms of sport, dancing, and general social activities such as eating out or going for a drink. Several people first noticed symptoms while they were doing the things they loved most, and the idea of losing such an important aspect of their life was sad. As one woman said, ‘Sport? That’s a huge loss. It meant everything.’

He misses walking, gardening and fishing. He liked outdoor activities and sometimes feels he’s…

Age at interview 61

Gender Male

Age at diagnosis 60

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So to sum up what’s the whole impact of all this been on you, really?

Well, disastrous in a way, because I was so active and I’ve been like cut off at the knees, if you know what I mean [laughs]. I loved gardening. We used to go out walking in the countryside a lot, which obviously we can’t now. I can’t take this contraption with me. A big thing really with me is not being able to do what I like doing. I mean, I used to fish a lot – local river – and it means going across fields and following the river. I used to like that, you know. But I shan’t be able to now. I should still be able to fish on the tow path and things like that, but that’s not what I like. I like getting, you know, I like getting covered in mud and that sort of thing, getting in there with them, that sort of thing. When I fish I’ll have to change my approach but it won’t be as good. And all in all, as I said, I feel like I’ve had my legs chopped off. I still can’t get used to that. I probably will eventually, I suppose.

Must be difficult. Have you been able to take up any hobbies that you hadn’t done before instead of those sort of activities?

I haven’t up to this point, no. Whether I will I don’t know. All my hobbies were getting out there and getting amongst them. You know what I mean? And I can’t seem to relate any of it to sitting here. Difficult, yeah. Maybe I will eventually cotton on to something. I mean, I can read, obviously, which is fine.

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She’s happy entertaining herself at home and seeing friends, but is sad she can’t do the…

Age at interview 70

Gender Female

Age at diagnosis 62

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When my carer’s gone, which is about 9.00, I get my breakfast, whatever I fancy, watch an hour of television and then I wash up and get something probably ready for our meal later, possibly. And then my nurse comes, Monday, Wednesday and Friday and my friends all come those days so they can take my bandages off and wash my legs for me. And then my nurse arrives eventually because she’s very busy and by then it’s normally lunch-time, at least 12 oclock, possibly 1. And in between that I’ve had phone calls and I ring my daughter and friends and they come in. I don’t really know what I do.

And I’ve got tapes and I’ve got Cds and normally by 10.00 or half past I have a friend that lives on her own, she pops in for half an hour, an hour and no, I’m never lonely and I’m never fed up or bored. And I go and sit in my lean-to out the back here and look at my garden and alter that in my mind and no, and I read a little, do a crossword a little. No, I’ve no set pattern.

I mean there are things that I used to love. I used to adore gardening, going to antique auctions or going to an antique market or nurseries. I used to enjoy that and walking and going round wherever. That isn’t possible, so why torture yourself imagining what you would do when you can’t?

I mean I was depressed for a spasm a few months ago because my friend had wheeled me up the garden and it was a dead loss and that did upset me but only momentarily because I know I can put it right. My friend wheeled me up my garden to have a look and I realised how many jobs there were to be done and the garden looked awful and that did for a day upset me. It made me very tearful. There was so much I hated about it and then I thought well, what’s the point of crying? I can do the only thing I can do and that’s find someone to do it, which I have.

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Driving was another activity that both men and women missed, not just because of the independence it gave them but also because of the enjoyment. Some men in particular added that it was part of their identity. Two men we talked to had worked in the motor industry. Here one explains how important it was to him to continue driving. (See also Interview 28 – Phil’s story).

Driving is his passion, but he will probably need to change to an automatic soon. He misses…

Age at interview 40

Gender Male

Age at diagnosis 39

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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.

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A range of car adaptations can help people to keep driving – see Motability for advice, and ‘Aids, equipment and adaptations for MND’.

Some said it was hard to find anything to take the place of previous hobbies. Others recommended taking up new activities, even if you were not very good at them or did not enjoy them particularly, to avoid getting bored and depressed at home. Some people found new activities they loved.

He has taken up writing, art, local history and running a community website. He’s writing his…

Age at interview 62

Gender Male

Age at diagnosis 53

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In between writing my life story, I started watercolour painting. Not very good but it was a pastime. I’ve since progressed to writing various articles on local history and the project I’m working on now is a complete, I’ll start again, is a list of shipwrecks along the old county of Glamorgan coastline, that extends from just the other side of Gower peninsula, just to the east of Cardiff. And the earliest wreck I’ve been able to find on record is dated 1737.

I also run a help page on our local web site. It’s the type of page for anybody wanting information about the town or the surrounding area. I help them in that respect. I also try to reunite old friends and families. People whove moved away trying to get back in touch with friends back here. So I don’t get many requests, maybe half a dozen a year, but through it I know have contacts all around the world, which gives me a lot of pleasure and I’m sure by the reaction and the thanks I’ve had that the people I’ve been able to help are more than satisfied with the service I am able to provide. Basically that is what I do with my time.

If you lose the ability to do one thing, think about another that you can do. I now produce electronic art through my computer. Not only does it amuse me when I make mistakes but I get great enjoyment out of it. Think about writing your life story for any grandchildren. Or if you have young children, and I hope nobody takes offence at what I’m saying, think about your own children and put them in a position where they can pick up something that will teach them about your own life and your background. Unfortunately I lost my father when I was fourteen. I knew very little about his background and I’d not been able to find out as much as I would like to know about his childhood and his upbringing. I know about his adult life but not about his childhood.

Don’t leave your children or your grandchildren in that situation. Try and cater for them. If you can’t write it yourself, get a friend or a family member to make notes of what you say and it doesn’t need to be in any special type of book, an ordinary writing pad will do, so long as you get it down on paper. Or if you are able to use a computer, write it on your computer and copy it on to a disk. So your children or grandchildren will know something of you and the life you had. That is very important to the way children react later in life. Don’t give up. It’s not worth giving up.

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She took a creative writing course because her arms weren’t strong enough to do art or pottery,…

Age at interview 58

Gender Female

Age at diagnosis 55

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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 has taken up piano, knitting and embroidery. They’re not things she’d ever have wanted to do…

Age at interview 53

Gender Female

Age at diagnosis 51

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Youve got to find something else whatever it is. I mean I, [cough] I think this craft work and stuff, I don’t really, I don’t really like it very much but – to be honest – but never mind, youve got to find something else to do. Bearing in mind youve got huge fatigue, so it’s not got to be a long session. Youve got to find something else to do, urgently. That would be, that would be a piece of advice. And whatever it is, you know, youve got to make the damn best of it. And if it’s not quite your cup of tea, so what? It’s something. Youve got to. I mean, Ive taken up the piano. I’m not good on the piano, I’m not a musical person, but I still do it because for that hour I’m thinking about that piano. And the hope is, you know, I might get a little better. I might get slightly better. I’m not great, because it’s not within me. Or the knitting, you know, I manage to knit something, and now I have to go to embroidery every Thursday, which is dead boring. But, yet, if you can still eat, you know, there’s meals and everything. So my advice would be, that’s one thing. My advice would be, if you havent got a partner, I think, you must try to scoop up, scoop people up and get company in. Even if you don’t like them very much. Or whatever, you must try to get them in, because people are distracting. And, you know, whoever they are, theyve got something to say. And if meals are something you can still do, if you havent got the throat thing, yeah, stick around with it. You know, and my, that would be the two bits of advice.

And the other advice, well, Ive got other bits of advice – the advice was, the chair is shit. Anybody will tell you that, but if it gets you to that restaurant and you can still eat, that’s something. It’s better than not going to that restaurant. Because you are out the door and you can see something and, and if you can drive, however it is, yeah, go for it. Even if it’s only one mile. So Id say all those things.

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A few people felt they had reached a quieter phase of life and were content to live life at a slower pace. Some felt they had gained new insights as a result.

He misses going out in the countryside, but now sitting by his window he enjoys seeing things…

Age at interview 62

Gender Male

Age at diagnosis 53

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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.

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Holidays and short trips were important for many people. Many decided to take the chance while they still could to visit places they had always wanted to see. Travel to exotic locations or short trips within the UK was also a welcome distraction and a way to keep positive and active. Several people went on holiday shortly after diagnosis and found it helped them come to terms with what was happening. They advised others to do the same.

He likes to get into the sunshine and plans holidays every few months.

Age at interview 45

Gender Male

Age at diagnosis 43

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At the moment because I’ve got from my GP and my consultant, it’s, ‘Just do things that, what you want to do. Go and see places that you want to see. At the moment I think that’s what I’m doing and it’s working. It’s sort of one thing off your head. I’ve tried, I’ve been to India, I’ve tried like staying in the sun, which obviously helps a great deal, and I think it just relaxes your mind. I mean, I know there’s people out there who think they can’t afford it or – but I would say, ‘Give it a go. It relaxes your mind.

Mm. So how often do you go on holiday at the moment?

At the moment I go like probably, maybe every couple of months, maybe at least three or four times a year, maybe even if for the week, just to get away. Enjoy it while you can. You don’t know what tomorrows going to bring.

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She was depressed after the diagnosis. Her family took her on two holidays before her PEG…

Age at interview 72

Gender Female

Age at diagnosis 72

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Yes. Well, I, at the very beginning of the diagnosis it was suggested that I should have a PEG while I was fit, and I’d thought that made sense. It was something I’d already seen done. And so I filled in, you know, said, ‘Yes. But then I had the opportunity first to go to Prague, and so I sort of said, ‘Not until after that. And then I, my daughter and son-in-law – I was very depressed at that time. I knew it was logical to have it, but I did feel blackened by the diagnosis – not tearful, just flattened. And so they marvellously booked up as a surprise a trip to Bruges and Ghent with – that’s going on the railway instead of flying. Prague had been bumpy. And I really felt that quality of life mattered more than anything. One didn’t know how short one’s life was. And it was something I’d never done. And I knew it was intimate and uncrowded. So I went, and it was absolutely a turnaround. It was a lovely experience. It wasn’t full of tourism. It was just delightful. And in a way it linked up with my past, living in Europe a bit, and it brought things together. I can’t explain how, but it was a very, very healing thing to do. So I was glad I put off the PEG for another bit. And then I got another date, but it was just wrong, because they realised how good the Bruges trip had been and they thought they ought to get another one in, while I could still travel. And we went to France, this time to Chantilly. And again it was this thing about, I felt guilty, but it was a lovely experience. And I think it’s given me so many images and feelings and connections with the beautiful bits of living, that it’s been well worth whatever happens with the PEG when I have it in about ten days’ time.

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Some people liked to plan well ahead, treating holidays as something to look forward to and motivate themselves, while others were worried if they planned too far ahead they might not be well enough to travel. Views were mixed on how easy it was to travel abroad; several were positive about the help offered by airlines and hotels, while others felt it was too much hassle, as well as expense. One man felt disabled access could be easier abroad than it was in the UK. He had also bought his own mobile hoist to take on holidays. (People who have a feeding tube who are travelling abroad should contact the company providing their feeds to discuss having supplies delivered to their holiday destination).

Wheelchair access and disabled parking seem easier in France. People are more firmly discouraged…

Age at interview 60

Gender Male

Age at diagnosis 56

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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.

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Travelling abroad is too much trouble. Hotels with special facilities exist but cost a lot, and…

Age at interview 56

Gender Male

Age at diagnosis 53

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What about holidays? Have you been on holiday?

No. That is because airlines in general and most hotels abroad, as well as I imagine most cities in other countries, are not disabled-friendly in any shape or form. It is a major obstacle, although some people do get round it by making lavish preparations to go to places. Obviously some of the big airlines might be able to help, but unfortunately the budget airlines are definitely not disabled-friendly. For a person in my condition the hassle and stress of travelling anywhere far is formidable. There are a few places abroad where one might go, such as a hotel in Malaga that’s very disabled-friendly. It has all the necessary equipment. It’s English run, actually. It’s got hoists and medical beds etc, but getting there is a major problem. However much I’m keen and active, as matters stand at present it’s always going to be a difficult situation. There are issues of going to the airport, hanging around at the airport, getting past check-in and through customs, being moved about, and moved from my wheelchair- because you have to be physically moved onto a special trolley to get onto the aircraft. The hassle of going anywhere abroad is difficult enough, but the cost is prohibitive, because of course medical equipment and facilities are extremely expensive, so that any hotel that caters for disabled people has prices that are about twice that of a normal price of a hotel room. We’d also have to buy upgraded seats with long – haul airlines or at least three seats with short – haul airlines, and take at least one of my carers with us. So the price is prohibitive.

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Getting travel insurance was a major issue for many people, and it was sometimes unclear whether diagnoses such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy) posed a problem with insurance companies. The MND Association advises people to shop around for three or four quotations to find the cheapest. They also advise people to make sure pieces of expensive equipment are insured (whether travelling or at home).

Travelling abroad can be difficult to arrange but it’s worth the trouble. PLS does not seem to be…

Age at interview 64

Gender Female

Age at diagnosis 56

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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 whos 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.

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

Age at interview 59

Gender Female

Age at diagnosis 56

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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.

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He has been talking to the MND Association about finding travel insurance for people with PMA. At…

Age at interview 57

Gender Male

Age at diagnosis 50

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Holidays, well we’ve taken a great deal. One major problem area has been I’ve had to tell my insurance company that I have progressive muscular atrophy and they have excluded that from my policy. And I’m currently in negotiation with the Motor Neurone Disease Association – not in negotiation, but we’re trying to find some insurance companies that will basically insure me or people with a similar PMA condition.

The Association is trying to get better deals – well, not better deals, just a deal of some sort, really, with an insurance company for people with specifically PMA. Somebody with ALS has perhaps got two years from diagnosis and the first year of that they may well be able to go on holiday. But obviously with somebody with PMA they could quite happily live, well, in my case eight years with the disease and I’m still relatively mobile as long as I don’t trip over, trip up. And so we have gone on a great deal of holidays. I could list them out to you but this year I think we’ve been on three or four perhaps even five abroad’ Cuba, California, Canada, Spain, Germany. Yes, and also trips around the UK. So I’m taking a risk by having PMA excluded from my insurance, but at the moment it’s a risk I’m prepared to take.

PMA, as I understand it, is not something that’s going to cause me great problems in two months’ time or six – well, six months’ time it might do. Who can say? Because any disease in the MND range progresses slower or quicker from one moment to the next. There’s no guaranteeing what’s going to happen, but we’ve just booked a cruise trip before Christmas and as I said I’m willing to take the chance that I won’t have any PMA problems or PMA-caused problems on that cruise. But that is a major area – travel insurance, that is – where the Association needs to carry on pushing the insurance brokers to provide some leeway for people with the longer-lasting variations of the disease.

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Many people were very aware that having frequent holidays can become very expensive and that not everyone can afford it. However, one woman dependent on benefits explained that her local social services department had arranged and paid for a holiday for her and her carer in the Lake District. The MND Association had also helped one young man to visit Amsterdam.

The MND Association helped him pay for a holiday with friends in Amsterdam. It was good to get…

Age at interview 24

Gender Male

Age at diagnosis 23

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Amsterdam was cool, yeah, got me out of here. Wasn’t nothing what I expected it to be but it’s different, put it that way.

Who did you go with?

Two of my mates. There was meant to be about five of us going, but only three of us went in the end. It was a good laugh though. I’m going go next January again’ I had to pay some of it like my spending money, but I had two hundred quid to help pay for my accommodation like for the week. And my mum just chipped in with paying for the flights and that’ It just perked me up, didn’t it? I’m out of [city], different culture, different people – not the same old, same old, same old, know what I mean? It’s all different, that’s why I wanted to go, like.

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Information sheets 12A to 12D on motoring, travel and holidays can be downloaded from the MND Association.

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