Motor Neurone Disease (MND)
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...
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 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.
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.
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.
He can still go on walks but not as long as he used to. He still goes to his local pub sometimes...
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.
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...
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.
She's happy entertaining herself at home and seeing friends, but is sad she can't do the...
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.
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...
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.
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...
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 who've 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.
She took a creative writing course because her arms weren't strong enough to do art or pottery,...
She has taken up piano, knitting and embroidery. They're not things she'd ever have wanted to do...
And the other advice, well, I've 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 I'd say all those things.
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...
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.
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.
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 tomorrow's going to bring.
She was depressed after the diagnosis. Her family took her on two holidays before her PEG...
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...
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.
Travelling abroad is too much trouble. Hotels with special facilities exist but cost a lot, and...
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.
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...
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.
Ann' No, we were upfront right at the very beginning, and we've not had a problem with that, have we?
Is that because you think people just don't know what it is, really?
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.'
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.
Ann' It's not always easy, but it can be done.
She loves travelling all over the world, but travel insurance costs a lot. She does not book too...
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.
He has been talking to the MND Association about finding travel insurance for people with PMA. At...
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.
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...
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.
Last reviewed August 2017.
Lasy update August 2017.