Mobility, arm and leg weakness in MND

For many people who talked to us, weakness in their arms, hands, legs and/or feet was a key symptom. The resulting changes in mobility and independence significantly affected their daily lives.

People with weakness in their arms described problems dressing, eating, washing, running the household, writing and using a computer, amongst other things. Arm or wrist supports had helped some. One man was thankful for CHIP and PIN technology which meant he didn’t have to sign his name in shops. People described how they adapted to each change and various practical solutions they had found.

Limited arm movement is his main practical problem. He has worked out ways to compensate, for…

Age at interview 40

Gender Male

Age at diagnosis 39

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My arms have been the big issue. So instead of my arm generating the movement, my shoulder takes the lead role in, in doing anything, because I can still move my shoulders. But then trying to do an exercise whereby you actually try to stimulate your correct or your normal muscle functions to, to carry out that particular exercise. And you’re having to sort of make a, a mental effort not to allow the compensation to take place because you’ve got used to doing things in a certain way. If I want to lift my hands up to a certain height, I know I swing my arm. I use my shoulder to, to swing my arm to get my arm up there. If I want to pick something up, it requires both hands. I can’t do it alone. And generally speaking, if it’s of any sort of weight or consequence – a pint, if I want to drink a pint, I need both hands on it and I need to lock my elbows in position and sort of stand, sit there [demonstrating] with my elbows on the table and, and drink the pint that way. Because heaven knows I wouldn’t want to spill it. So it’s, it – you know, it’s difficult. You have to learn to compensate and you just do things in a different way.

Have you ever tried any armrests or anything like that?

No, no. It’s, ‘it’s just finding a way in which you can cope. We have a particularly heavy duvet [laughs] and I can’t pull the damn thing up over myself. But I have an accommodating wife who tucks me in at night, which is good. It’s little things like that. You know, you – at the moment I compensate. I kind of grab hold of the end of the duvet and then if we’re busy and I’ve got into bed first I try and cover myself up. I lift the duvet with my knees. You know, get my knees in the air and try and pull it up towards me as best I can. And you just do. You, you have to try and compensate in one way or another.

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Day-to-day living is hard, especially eating, washing and dressing. His hands get tend to get…

Age at interview 24

Gender Male

Age at diagnosis 23

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What about eating out?

No. No, it’s hard work that is. I don’t eat out now because I, it’s hard work like, you know? See what I mean it’s easier with a, when I eat the sandwiches because I can hold that but like roast dinner or summat it’s really hard work like you know? Or beans, they go everywhere like, you know, it’s just hard work. Honestly that’s what, that’s the worst thing, is eating, trying get the, the spoon up, you know, to your mouth. That’s really bad yeah that bit, definitely.

Is there anything you can do to help it?

There ain’t nothing you can do. My mum helps me, you know, custard and, you know, that’s the worst bit. Trying to get, keep that on the spoon like, the cereal, stuff like that now, that’s really hard work that is, really hard work. And washing’s hard work you know?

The washing?

Well drying, sorry, drying.

Yeah, yeah.

Trying to get the towel on, it’s a joke.

Yeah.

Yeah things like that. It’s all hard work

It’s the day-to-day living.

Day-to-day things what you take for granted, it’s, so once you’ve got it that’s what I mean no-one else knows what you’re going through bar you, because they’re, you know, they, they don’t know. They don’t know what it’s like. Like you said eating that just sort of says it all, that’s the hardest thing.

Like you say day-to-day things like.

Day-to-day?

Yeah living, day-to-day living, it’s hard work And trying to get a coat on, that’s hard. Trying to get things out my pocket, especially now it’s cold, now it’s cold mind, I loves the summer because I can walk, wear shorts and t-shirt and it’s fine and my hands work alright but then bang when it gets cold, my hands stop working. They don’t, they won’t move they’ll just seize up like that, and they won’t, they won’t move.

So they’re worse in the cold weather?

Yeah, freezing. My hands go numb, even when now with the nights have gone cold like they yeah, they get real bad. That’s summat that when, no-one knows what you’re going through. Honestly when I’m, when I’m out, I want to get summat and my phone rings and my hands are cold, I, they won’t do it [laughs] and they, I miss a call.

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She has adapted to changes in her arms and legs. She managed cooking by getting her husband to…

Age at interview 58

Gender Female

Age at diagnosis 55

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Well I think everything got more and more difficult. Walking was like walking through porridge or something like that, you know. Managing to do the hoovering and things like that were difficult. I’d tend to lose my balance a bit. If it was windy and I was trying to walk anywhere I’d have to hang on to something. If I was going to sneeze when I was walking I had to hang on to something. And you progress from, you know, just walking by yourself to walking with a walking stick, then with a walking stick and somebody else and things like that. And you sort of adapt as time goes on. I found cooking quite difficult, but I used to get the meal into the oven. I could carry cold dishes and get them into the oven, often by sliding them on to the lowered oven door and then up into the thing. And then I’d leave it for my husband to get the hot ones out you see. So for a long time I was cooking the meal and leaving it for my husband to serve up, because I couldn’t lift heavy saucepans. But I could put things into a saucepan if it was left on the hob for me. So all sorts of things like that, little stratagems which would make use of what I could do and then let him do the dangerous bits, I would carry on with.

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 it 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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He tries to keep warm and avoid falls – his arms are too weak to break his fall. He uses his head…

Age at interview 57

Gender Male

Age at diagnosis 50

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As the disease has affected me or as for how it has affected me it, as I said it basically started off with muscle wastage on one shoulder and then it moved to the other shoulder. And has moved to my hands after that really. I can still throw my arms around and I can use my hands but not very well. And if I get cold then my arms and my hands in particular become almost useless. I can still throw my arms around so I can. If I want to reach a door handle I can, I throw my arm at the door handle, grab it hopefully and then turn it although the turning part is necessarily quite weak because my strength is quite weak because I have no muscle or little muscle.

So the main thing about my condition as it is now is to remember to stay warm and not to fall over. Because again with no use of my arms if I trip and fall which is quite a common thing for MND patients to do I’ve got no way of breaking my fall. And it doesn’t matter if it’s on grass that’s ok but if it’s on concrete and there’s an awful lot of concrete around the world nowadays I’ve got to be very, I’ve just got to be careful not to do so.

And when my partner and I go out walking we tend to hold, well link arms. But we’re both aware that if I start falling then the best thing she can do for me is to let go because if we both go down in a heap and she gets hurt then I’ve done neither of us a favour by, I mean I might get hurt as well but that’s. If there isn’t anybody to look after me then that’s, we’ve doubled the problem if you like.

Do you have any aids to help you with walking?

No. The only thing that might help me is, would be to get an electric scooter or something like that at some point in the future. But as for aids in walking that would involve carrying something around and moving it. And if it was a stick then I couldn’t use, I couldn’t move it. I couldn’t lean on it and move it or lean on it and pivot. I mean, as I said I’ve got no strength in my arms so anything like that it wouldn’t work. If I went for a trolley or something like, you can get stands which have wheels on and you can push them along but I think it’s the same. It gives me, I’ve still got the same problem that I’d have to have to have the strength in my arms to move whatever device that was trying to help me.

And how long ago did your arms start becoming weak?

Well I suppose it was, I noticed, I started noticing it more after the diagnosis which was, as I said getting on for 8 years ago and it’s just gradually progressed. I was going to say the fun of the disease if that’s, it sounds, it probably doesn’t sound, make much sense. But it’s quite interesting trying to work out different ways of doing things, different ways of getting into a bath or having a shower or moving the showerhead. I mean, I do a lot of, well not a lot, I do a number of things with my head. So if I want to get in the shower and I don’t want to get cold then I move the showerhead with my head one way and get the water the right temperature then get under it. Have the shower and then move the showerhead back again and then turn the shower off. And I mean that’s one I’ve only really started practising in the last few weeks. It was, well it was fairly obvious that something to try. I didn’t see it at the first.

You use your head for all of that for switching it off as well?

No not for switching it off. No I can throw my arms at the tap.

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Not being able to hug or express affection physically with their hands could be upsetting. (See ‘Relationships and sex’). On their website, the MND Association provides information sheets 13 A and 13B on sex and relationships to answer some of the concerns people may have about intimacy.

One woman explained how some people did not know how to respond to her lack of hand and arm movement.

People seem to feel awkward about reaching out to touch her hand or place something in it. The…

Age at interview 34

Gender Female

Age at diagnosis 31

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Do you find that people talk to your husband rather than you when you’re out together?

No, but – not too badly, actually. No, I haven’t really come across that. I expected to, but not really. What I do find is that people will pass something to you, and I can’t move my arm up to, to reach it or to shake their hand, but they won’t bring it any closer. There’s, it’s really, really interesting. They’ve kind of got a, a physical barrier. And it, and it’s personal space, isn’t it? which they won’t cross.

Is that even after knowing that your arms are affected? Because I just wonder if it’s that people sort of think, ‘Wheelchair equals legs.

Yes, I think it is that. And, and so when people pass something to me, I’ll expect them not to put it right in my hand. I’ll expect them to, you know, leave a bit of space for my hand to then meet theirs. But then when my hand isn’t moving or is just only, it’s only moved its inch which it’s going to, they’re still very, very reluctant to put it in my hand. They just, they just don’t know what to do. Yet my friend’s 3-year-old came and gave something to me, and just put it straight in my hand. And it, so it’s interesting. It’s not, it’s not till we’re a bit older that we learn about personal space, and you just don’t go past that. So that’s frustrating, and I tend to, yeah, I tend to avoid those instances, and I, and I just get them to pass it to whoever I’m with. Because I don’t need that, you know, I don’t want that. I just avoid that encounter in a way. Yeah. And when people want to shake your hand or they come and greet you, yeah, I, I tend to find that people that are in the know will come and, you know, come straight to your hand straight away, and people who aren’t are, are more hesitant or might even give up.

Yeah.

That’s a bit upsetting. Mm.

Yes, it’s a very difficult one, isn’t it? Because I’m sure some of it is that people sort of associate wheelchairs with lower-half loss of mobility [yeah] and aren’t kind of prepared [yeah]. So it takes them by surprise when you can’t move it far enough to…

Yeah, and I do think that there’s no malice in it. It’s, it’s just people don’t have the experience of it. I wouldn’t have, I wouldn’t know what things would matter to me. But it, it’s those little things. And it’s, what I also find with, the most supportive people in terms of caring for me are those that can anticipate my needs and will ask me if I want things before I have to ask. So I don’t – so I will, if I’ve got a friend with me all day or a, or a relative, I will much prefer it if they almost take responsibility for checking my bag, you know, and, and getting my catheter bag emptied, rather than me have to say, ‘Oh, could you empty my catheter bag?’ That’s not nice for me to have to ask.

But – or for them to – I can’t, I can’t get anything for myself. So if they’re not sat talking to me and the TV’s not on, I’m not entertained. You know, if they go off and do something else, I’m not entertained, and I’ve got no way of reaching out for, to get my book or switch the radio on or, and so it’s, again those people that are intuitive I find always notice that and say, ‘Right, I’m just going to go and do this. Can I get you a book?’ They’ll, they won’t just say, ‘Oh, I’m just going to go and do that. You know, they’ll know that I, I need to be set up. Or, or they’ll say, ‘Oh, oh, you haven’t, you haven’t had a little nap or something or, you know, ‘How about we just make half an hour now and, you know, just have a bit of quiet time, or–‘ – but not in a patronising way. Or, you know, ‘Can I rub your feet?’ Lovely for someone to say, Can you rub my feet? I – because although they say to me, We’re more than happy to rub your feet. Just ask me any time, it’s another thing to ask. I’ve already just asked you to get me a drink ‘Get me this’ or, ‘Oh, no, not that straw, the other straw. Oh, now, can you rub my feet? Yet for them to think of that and say, Oh, oh, can I rub your feet? that’s lovely. And it’s just little things. And they, and some people are, are naturally talented at it. And it’s, it’s lovely to see that.

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Many people with leg weakness and foot drop said they had lost their balance and fallen or tripped. This was inconvenient and distressing, and sometimes people hurt themselves quite badly. The husband of one woman who fell just outside her house said, ‘It just looked like somebody had cut the strings on a puppet.’ She broke her thigh bone. Another person broke a wrist putting out a hand to break his fall. Several said it was not just the falling over that was the problem but managing to get up again, especially if they had arm weakness too. Several female carers found their husband or partner too heavy to lift. Again, people mentioned various practical solutions.

Gradually he found it harder to get up from sitting, and he had several falls. His wife can’t…

Age at interview 60

Gender Male

Age at diagnosis 56

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And I suppose the next thing that happened was that gradually my legs got weaker. I think the first thing that happened was that I found it difficult to get off the ground if you were squatting on the ground, you know, squatting on your hunkers, I couldn’t then stand up. Then I found getting out of low chairs difficult, and then I found slightly higher chairs difficult. And we tried various tricks and techniques. The chair I used to use we raised up on first of all a board, and then two boards, and then we put a large sort of rather like a ski, a runner under it, which is a block of wood about 4 inches thick, and I could still get up.

And then I got to the stage where I couldn’t get up without help, and my wife would sort of take hold of me and rock backwards. She wasn’t having to lift me, which was just as well, because it’s never easy to lift somebody, bad for your back. She was just rocking me and I was able to resist with my feet. And that kept going until a year ago I suppose. I was still able to get up but it was getting harder and harder. And gradually my knees were going, so I couldn’t lock out my legs. So she couldn’t lift me backwards. And I think that probably ended around about December 2005. And by this time I was having trouble walking too. Yes, right through 2004 I was okay walking.

I fell occasionally, usually through loss of balance, but that wasn’t necessarily my legs going. That was possibly because my arms had gone. I remember stumbling halfway up Vesuvius, and that was because my legs slipped away from me on the clinker. Now, normally you just throw your arms out and balance. But being unable to throw my arms out meant that I slipped over. And getting up off the ground was by that time difficult. I think people rushed, they knew I had MND and so they helped me up and I didn’t really think about it. Probably some time in 2004 I was unable to get up off the ground on my own.

I had one rather horrendous time in Sicily. We’d been thoroughly enjoying ourselves, and we broke away from the party, they’d all gone home. And we decided to go to the Lipari Islands and have a look round, partly to see the volcano of Stromboli and partly just to enjoy ourselves and go round. We did a mule track, and that was about 4 kilometres downhill, no relief, nowhere to rest, no stones to sit on, no walls to lean against, nothing. And right down at the bottom, my right foot went away from under me and my knee couldn’t hold me. I slipped and fell over and took large lumps out of my leg and knee. I think it took me half an hour before I could get up. I had to sort of turn over and kneel on that knee and then rock backwards with my wife helping. It took me about half an hour to get any strength back into my leg. It was really annoying because I finished the walk, which was no more than 100 metres down to the road, by which time there was a wall that I could sit on to rest, and I did, then we walked another couple of miles back. But it was just the continuous downhill making the knees go.

And I’ve fallen four or five times since then – four times anyway fairly spectacularly. Once I tried to come through the front door, and I was stupid again. I knew that I shouldn’t go with my right leg forward. But I went over the lintel and of course my right knee collapsed and I fell, which was kind of embarrassing because I was half in the door, in the house, and half out of the house. By this time we’d been given a hoist, an NHS hoist, which was a steel hoist, which unfortunately was upstairs. And although it took to bits, I think it took my wife about half an hour to get it downstairs, because it was so heavy, and then to reassemble it. It was most awkward because I wasn’t in on the floor properly. I was sort of half in the door, so there was nowhere really to put the hoist which was outside. And interestingly a number of neighbours went past and they all looked, they must have been curious. But nobody stopped or said, How are you? or – very odd. I don’t know what they thought I was doing. Never mind. Anyway this hoist was okay, but it was so heavy that we decided to replace it with something much lighter and a year ago we went to one of the disabled exhibitions.

We bought a Molift hoist, which is a Norwegian hoist. We’d had it recommended to us by somebody who doesn’t have MND but has MS. And it was a really good recommendation. You have to buy it and it’s not cheap, but it’s a lightweight aluminum hoist as opposed to the steel one, which my wife can lift. It’s shorter, smaller, we’ve taken it on holiday. It travels everywhere with us. We don’t travel light. But it’s really wonderful. I know there must be other sorts of hoist like that, but we’ve not seen them as good. It seems to suit me, it seems to suit my wife, because she can work it.

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He fell halfway up the stairs. He crawled to his alarm call buzzer to get help. Now he has a stair lift. Ideally he needs one wheelchair upstairs and one downstairs.

Age at interview 80

Gender Male

Age at diagnosis 80

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Here also I, two or three times I have fallen down. And the strength – once I was having a rest downstairs and I fell asleep. And I took my telephone also down. And I came back. Suddenly I realised, The telephone is downstairs. I’d better go back because somebody might ring me. I went back again, and I started coming back again, the same continuity. When I went halfway and my hand, this chair was not there, electric chair.

The stairlift?

The stairlift, the right word. The stairlift was not there, and I was trying to come up. And I was so tired. Halfway I just wanted to – the question came, Should I leave my hands and go down tumbling, or should I hang on? And then I stopped thinking completely, waited about ten minutes or something, then I pulled myself up and then I collapsed here. And I didn’t have this buzzer. The buzzer was here. And from there to walk, I mean to crawl, even the hands are getting weaker. And it reminded me of these alligators – well, alligators have got four legs [laughs]. But the snake even, they don’t have any legs, how do they wriggle and reach the places? It’s, all these things are reminding me of these things. Anyhow, it took me a long time to come and reach that. And, then I thought, Should I ring, or should I not ring? Should I wait? Because I was so exhausted. I’ll just press the thing. And then they ask me, What do you want? And I told them, I need help. Then they rang back to my neighbours and they came. Even they could not lift me, because I mean they’re not that strong either [laughs]. So, but anyhow I tried, wriggled up, and stood, sit there. It takes a very, it’s difficult to place myself from here to there, sort of thing. That is the, that thing that I have to go through and it’s my most weak point. Otherwise, okay, it’s a lovely day.

So you’ve got a, an alarm call?

Yes, I have, which is downstairs I think somewhere.

And you’ve got a, a stairlift?

Yes, I have got a stairlift.

Zimmer frame. Obviously a wheelchair.

Yes.

Are there any other bits of equipment or adaptations you’ve had round the house that have been helpful or not helpful?

No. Well, I’ve been told, well, not yet, because I can go around with this [wheelchair]. This is very helpful. Downstairs I’ve got only a Zimmer frame, from there to go to, I have to go to the toilet, rushing, running. And it’s a very helpless thing. And I heard that I could get another chair like this. I need another chair like this, that I could move about easily. That’s my necessity, which has not happened yet.

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He fell on the stairs and within a year could no longer walk. His hand is too weak to operate a…

Age at interview 56

Gender Male

Age at diagnosis 53

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I’ve been going with a stick for about thirty years because of chronic back pain. Whether that had a bearing on the odds of Motor Neurone Disease developing I don’t know, because I’ve had a back condition and was in frequent pain since I was young. I was on Brufen tablets for about twenty years. In terms of the current illness, namely MND, in the autumn of 2004 of course what happened was the first onset of my leg weakness [deletion]. I’d been tripping more and more, which I thought at the time might be because I’d had a very serious pneumonia at the beginning of that year and I thought I was excessively tired and trying to get around too soon. At first I put it down to that. But the first serious thing was when I went to a friend’s house and I had to go to the toilet. I managed to walk halfway up before my legs failed me and I had to be dragged up to the top. Afterwards I gingerly walked down again. That was the first time I really felt there was something seriously wrong with my legs. This was about September 2004 – no, it was October 2004. Then about a month later, in November 2004, I had to resort to a walking frame with wheels. First of all I was given one of those triangular walking aids without a seat, and then I got a proper and steadier one where I could sit down. I used that second aid until the spring of 2005, when I found that even that was becoming too hard.

Over the spring and summer of 2005, I was finding less ability to walk at all, and from about April 2005 I started using a wheelchair on a regular basis. In about June or July 2005 I took some hesitant steps with the help of my day nurse and her husband during a walk in a local park. In the autumn of the same year, with the encouragement of, and a considerable amount of assistance from, my nurse and my carer, on a few occasions I managed to take a few steps whilst still living upstairs – we’ve now moved down to the ground floor. They were trying to encourage me by saying ‘Well, practise what you can with your legs. I emphasise that this was on only a few occasions and then my legs just folded, and stopped working altogether. So my last steps were in around October 2005.

Have you ever used a scooter, one of those electric scooter things, or only the wheelchair?

I couldn’t use an electric scooter because my arms by then had failed. Following on my right hand’s deterioration my left hand started to fail in the summer of 2004, and whilst it declined slowly, by the end of 2004 I was no longer able to do anything useful with it. I was virtually paralysed in both my arms and hands.

We were told by the wheelchair people, ‘Obviously you can use the wheelchair, but try and walk as long as you can possibly walk. If you sit in the wheelchair you’ll never get up again. I took their advice. I did try, still in the latter half of 2004, to do some leg exercises. That became increasingly difficult as time went by and my legs got weaker, and increasingly there were occasions when I wasn’t able to get up from the floor.

What’s your general attitude to progression? Do you try and keep it to the back of your mind? Are you looking out for symptoms? Are you thinking ahead about what other equipment you might need?

Well, we obviously have tried to react as matters progressed. Perhaps it was a mistake, because maybe I should have earlier gone for a hoist downstairs etc. We tended to just say, ‘Well, let’s see what happens with the equipment we’ve got.

To a large extent this approach was fine, except that some of the equipment took time to install. I had to be washed, for example, in bed for a good few weeks before they installed a bath lift. But otherwise we tended to sort of take things as they come.

That’s the trouble, isn’t it, it’s this lead time on equipment, that sometimes if you haven’t already got the plans in place that you, you get high and dry for a bit, before it.

Yes, I tend to feel, though – there is a point to that. There is that point that you’re then left high and dry – in the literal sense as far as the bath [laughs]. But again I feel that anticipating that you’re going to be worse makes you worse. I’ve always felt that. And that’s why I’ve tried to resist it.

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Some people found humour helped them deal with the embarrassment of falling in public.

She and her daughters laugh about it when she falls over. Life is too short to get upset about it.

Age at interview 54

Gender Female

Age at diagnosis 52

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You have to laugh about it, don’t you? Like when I fall over. I mean I, we were in a restaurant in South Africa a year ago, and we were standing in the foyer of this restaurant and it was a sort of a cobblestone thing. And I obviously moved my foot wrong and I just fell over, I just keeled over. And another family had come in to the, the forecourt and they looked at me as if I was drunk. And we were in absolute hysterics while one of my daughters had to pick me up, because you just have to laugh about it. We used to laugh when I used to trip over when we had no idea what was the matter with me. I remember going into [town] with my older daughter and I’d got a huge blister on my foot from some shoes and I said, ‘Look, I’m going to have to wear my flip-flops. And you know what I’m like if I wear flip-flops, I’ll trip over. And so you’ll have to watch me. And we were walking along and suddenly there I was sprawled across the pavement. And she said, ‘Mum, you could have landed on that little boy. Not, ‘Oh, you poor thing. How are you? Did you get hurt?’ [laughs] So I thought, ‘Thanks very much. That’s nice. So you, you just have to laugh about it. You can’t, you can’t sit there grizzling, you can’t bemoan your fate, because life’s too short. And it’s certainly too short now. So.

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However, others found it more difficult to laugh it off, as one man explained:

‘You can be embarrassed because you’re so slow, and if you fall…I’m afraid I’m not the sort of person that can laugh that off. I get really a bit uptight about that and I just don’t like it, so I’m better in my own place. I feel I’m happier here. I do things at my own pace and my own speed.’

As some people above described, coldness in their hands or feet could be uncomfortable and restrict movement even further. They recommended trying to keep warm, for example by wearing fur-lined boots, and to keep moving as far as possible. People also talked about getting stiff limbs because of the lack of movement, and several said they got uncomfortable in bed because turning over was hard.

She uses slippery nighties and a strap to pull her leg up to help her turn in bed. She advises…

Age at interview 58

Gender Female

Age at diagnosis 55

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Turning over is getting difficult in the night. And so we have to devise little ways of pulling legs up and things like that. It’s just one thing after another, you know. You get used to one thing and you know, there’s a sort of plateau every so often, where things go smoothly and on at one level, and then there’s a little drop in strength in one area or another and you find you’ve got to revise everything you do to cope with that. So turning over in bed is the most recent one. And I now have a loop of, a strap to put round my foot, so I can pull my leg up to turn over. So that makes it easier.

It sounds like a lot of the things have been you and your husband being innovative.

Yes.

And thinking how you can get round problems.

That’s right, yes, yes. It’s mostly that. And, you know, sometimes my daughters as well are quite innovative. yes, that’s what we have to do. Like just getting slippery nighties instead of cotton ones, because if you wear a cotton T-shirt it’s much harder to turn over in bed. If you can get a slippery, stretchy nylon nightie, horrible though it is, it’s a lot easier. And it’s not easy to get a slippery nylon nightie these days. You’d be surprised how difficult it was. I had people scouring Marks and Spencer’s for me, and there was nothing in Marks and Spencer’s or British Home Stores. And I eventually found something in one of those horrible, cheap catalogues and I bought four of them, because they were just what I wanted really. And they’re slippery and shiny and really rather naff-looking, but they are good at turning over in bed. So you’ve got to go for little things like that, you know, which help you. I believe some people like satin sheets, and we haven’t got to that stage yet, but somebody was telling me that they’re a good thing to have if you want to turn over. So just look for what you can get really.

And it’s constantly changing.

Yes, it is, yes. I keep dreading the next thing, you know. I find that each thing you do is okay for a while and then, you know, like walking, I was beginning to dread having to walk anywhere. I’d dread having to get to the end of the garden path. I’d dread having to walk into the place where I was working. And I would dread having to get from here to the loo for example. And so gradually things become a bit frightening and then you have to sort of say, ‘Well, am I safe doing this?’ And then you have a little sort of time when you’re not quite safe and you think, ‘If I do this again I might fall. I’d better make another arrangement. And so you decide to, you know, move into a chair, or have a ramp or have a handrail put up. And each little thing, you just have to, really don’t push it until you actually fall. You’ve got to make the decision before you fall, because if you fall you might do more damage. So you’ve got to be a bit, it’s no good being brave and saying, ‘I can do this’ to the point where you actually have a disaster. You’ve got to give in a little bit before and accept that you’re getting weak and say, ‘Right, well, I will now use a wheelchair or whatever.

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As this woman explained, dealing with the progression of symptoms was a process of constant adjustment, both practically and emotionally. Comments included,

‘You feel the progression as it goes through you. But once it’s started it stops being frightening. Because you become aware of it, and you’re conscious of it, so it’s not frightening any more. It’s frightening at the beginning.’

‘I spent the whole year and a half in a state of graduated denial, just focusing on the here and now and not thinking about the future, and hoping that this little plateau would last as long as it would before the next one. But inevitably there always was a next one. And at each stage there was that sort of heart sinking feeling again.’

People had different attitudes to what was the best way to deal with progression – some said they resisted aids and equipment as long as they possibly could, and only moved on to the next stage when they really had to. Others felt it was important to anticipate changes and get prepared. For many people it was a question of trying to strike a balance between these approaches. (See also ‘Philosophy, attitude and messages to others’). The decision to move into a wheelchair or use an electric scooter was often a particularly significant marker of change. As one man said,

‘One of the most traumatic things was when do you go into a wheelchair? When do you suddenly decide you’re disabled? You know, get a Blue Badge sticker. It has its advantages – always find a parking space and generally free. So, you know, there’s good news everywhere. But it really is that moment, and there are all these emotional hurdles you have to overcome as you go through.’

Using a wheelchair or scooter helped some re-discover a level of freedom and independence they had begun to lose, but to others it was a symbol of greater dependence which they wanted to resist at all costs.

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

Age at interview 59

Gender Female

Age at diagnosis 56

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

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

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

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She advises others to hold out as long possible before moving onto the next piece of equipment…

Age at interview 53

Gender Female

Age at diagnosis 51

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I think another bit of advice to people might be, you know, don’t – you get all these aids and they drop all these things off, you know – for damn sight do your best to battle with the one youve got. And then give in. I know it’s giving in, but therell be, come a point youll have to move on to the next one, and we know the next, the last one’s that. You know, battle on best you can, and do what you can with each one. I went miles in that three-wheel frame, even though it hurt. Because I’m mad. But I was determined. I was in agony at the end. But I just wanted to see it out and hoped it was my last one.

You know, so do what you can. But it’s a huge jolt when you go to the chair, and by then your friends have lost interest anyway. People say, Well, you know, [pah] you’re on a frame, well, you know, it looks like you’re going to – They don’t realise that that’s the biggie. The frames are, you’re still vertical. you’re still in the land of the vertical, which is a big difference to the land of the sitting. And I don’t think professions or anybody fully, they don’t seem to, don’t seem to fully appreciate the, the problem. They say, Oh youve got your freedom now. You know, A chair, you can whizz Yeah, freedom, yeah, but there are a whole load of other things I cant do now, that I could do when I was on the, my frame.

Mmm. Yes, even if it’s just getting through doors and things, and.

And now I’m all scrunched up.

Yes, and steps, and yeah.

And, you know, I’m getting all urggh. But theyll say, I don’t think, – you know, all that counselling, probably too soon, I should be having counselling now. She kept saying, Oh, you might not go into the chair. You might not go into the chair. Yeah, but, you know, I don’t know. Feels like I will. There’s, because once you’re on that downhill slope there’s no brake goes on, there’s no remission with this one. Some people do stabilise, I, I appreciate, but mine just continues to go downhill. My next worry now is that, Oh, I’m going to struggle to get out of bed now. I think, How am I supposed to do this? Oh, I see, youve you know, I’m struggling because my column muscles have all gone, so I can hardly get out of bed. Can hardly get off the chair.

My next step is, Oh, I’m supposed to have a hoist, am I? The OT said to me, Oh youd better think about getting a bathroom with a roll-in shower. Those things are bloody enormous. Those things are like, you know, my dignity’s well out the window. If I think this is bad, what am I going to think when I’m being hoisted up and I’m supposed to face the day in a, I’m put in the chair for the day? Oh my God. At least I can still get out of it. Or I can go to a restaurant and I can still get out of it. And Id, that way Id advise people while they can, do it. Even, you know, I, I still get out if I can. I still look on it as some transport and I refuse to sit in it all day, because it makes you feel ill, actually. It’s not comfortable.

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A major factor in people’s attitudes to mobility aids was their experience of disabled access and the attitudes of society to people with disabilities. Some had good experiences, for example finding Clos-o-Mat toilets (which have a washing and drying function) in a local arts centre, or finding shop staff really helpful, and some said their local towns were quite good about providing lowered pavements and ramps. However, many said there was still a long way to go. Often people felt adaptations to improve disabled access met a bare minimum standard and still left people in a wheelchair or people with arm weakness with a lot of problems. Issues included:

  • Ramps which were too steep or bumpy
  • Uneven pavements and lack of lowered crossing points
  • Lowered pavements with a slight ‘lip’
  • Disabled toilets without enough space to turn a wheelchair, or used as storage space
  • Blue badge parking spaces which were too far from the building or were used by non-disabled people
  • Heavy fire doors
  • Non-disabled people using lifts in shops or public buildings when they could use the stairs, or using disabled toilets.

Several people had taken up particular issues with their local authority, with mixed results. Some said the authority responded quickly to suggestions, but others were referred from one department to another, or got a less positive response.

He is battling to get disabled parking spaces closer to public buildings but the council says…

Age at interview 76

Gender Male

Age at diagnosis 61

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I have a wheelchair which I use when necessary but I’m trying hard not to use a wheelchair. I want to walk as long as I can. The only real problem I have is with the Local Authority, they seem to be able to place the disabled bays in the most useless places and I’m fighting a battle with the Local Authority at the moment because the disabled bays are so far from the entrance door to the, to the sports centre that it’s, it’s ridiculous in my opinion. And there’s an area at the side which could be quite easily made into disabled bays and they just don’t seem to see the necessity and I say they look at me with, with a bland expression and they say it’s within government guidelines. I haven’t seen these guidelines. To me there’s only one guideline and that is to have the disabled bay as near the entrance as possible. But they just don’t seem to have any idea of who they consult about the positioning of them, don’t seem to know where they should be.

And, and to me that’s the, we have a situation where I go where the local library and the, the staff car park is all nearer the entrance than the disabled bays and I think this is absolutely horrendous and shows a, a complete lack of understanding. But with the aid of a good friend I’m, I’m fighting the problem and I will continue to do so as long as I can. Not for me alone, but there’s other people who go with me who are disabled and they have the same problem and they don’t seem to take into account your pride and the fact that you want to be independent. We don’t want to be pushed along in a wheelchair. That will come quick enough and I think that a, a good deal more could be done certainly by our Local Authority, the Borough Council.

I mean in my estimation there’s an area of land, which is nearer the, the, the entrance door, which could put at least six disabled bays on there and they’d be all nearer the entrance than the existing ones, and usually when I go to use one of these disabled bays, often there’s a mother and child parked in there and they’re not very co-operative.

Is there anything else about getting around that you’ve noticed is harder?

It’s just the sheer effort that’s required in, in my case I can only speak for myself and it, it would probably be easier for me if I went in a wheelchair but I’m determined to walk as long as I can. What I was fortunate enough to do I won an electric scooter and I sometimes use that to go down the street and it makes such a difference to be able to move and talk, you talk to people. If you’re in the car you tend to be isolated and you can’t often get parked where you need to be parked within striking distance of where you want to be, but the electric scooter makes a big difference.

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The location and design of ramps and dropped kerbs is often a problem but his local council has…

Age at interview 60

Gender Male

Age at diagnosis 56

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I was singing in a church last Friday and it had been designed obviously with a wheelchair ramp for the outside. But the inside had been designed before they thought of wheelchairs. And the ramp was a new concrete ramp. And I actually had to take the footrest off this to get through the door. The corridor was narrow, the door was wide enough, but I couldn’t swing the wheelchair because of the position of the door opening into the corridor. So I had to take the wheelchair footrests off and let my feet hang. That’s a drawback with these wheelchairs. If you make them tall enough for tall people, then the footrests, the wheelchair is so high it’s inconvenient. It can’t go into taxis, it can’t go into disabled vehicles. If you make it lower, and your feet are on the footrests like mine are, then the leg is lifted off the cushion. Even though I have a wedge-shaped cushion it’s still lifted off and you’re sort of perched on the back of your bottom which gets sore after a while. So what I tend to do, which is an anathema to occupational therapists, it sends them into fits and they think this is terrible, is to let my legs hang occasionally. Just lift off the footrests, not take them right off, but just lift them up and let my feet hang, which isn’t very comfortable after a while because you then find your knees hurt. My knees hurt because I haven’t got muscles to hold them. At least my legs are a bit more comfortable.

If you have the footrests lower of course, you wouldn’t be able to go over any kerbs, because the chair is fitted with a kerb-lifter, which I rather upset my occupational therapist by calling a kerb-crawler. Anyway this kerb-lifter thing works, but if the footrests are in the down position on steep curves, the footrests hit the kerb before the kerb-lifter does.

Again the church I was going to had been very carefully – they’d put a ramp in. Unfortunately nobody had thought that perhaps they needed a ramp from the road, where you unload, into the church, onto the pavement, so that you can get into the church. And I had to go about 200 yards down the road to find a place where there was a drive and a dropped kerb, which was a very steep dropped kerb, simply to get in the church.

Dropped kerbs are a problem. Where we live there’s a station, oh, 300 yards away, 200 yards away. And to get to it there are 1, 2, 3, 4, 5, 6, 7 dropped kerbs. One of them wasn’t dropped until I asked. Two of them were newly put in and horrendously steep. With my old wheelchair, when I tried to go up it, the front wheels used to come off the ground. And because the other two were on the hill, they were also very steep. So I rang the local authority, who haven’t – it’s very difficult to work out who do the kerbs, but it turns out to be the county council, which seems to be very illogical. Anyway the county council sent somebody round, who happened to be an ex-pupil of mine, and he and I hatched a plan and so they’ve done these seven kerbs much better now. It’s great. The county have been very good about that.

But there are care homes in [our town], my wife visits a lady who used to be in her choir at a care home in [our town], and as you come out of that there isn’t a dropped kerb. And the residents there used to object. So then they put in one, but there isn’t one on the other side of the road. So you have to cross up to a place where there’s a residence with a garage, and then you go to the next road and there isn’t a dropped kerb, so you go up the road to the first house with a garage and cross. It’s quite a problem. Some places are brilliant.

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Access to shops was often a problem. Many said they did not like having to be ‘parked’ outside a shop with poor access. One man recommended taking a digital camera on shopping trips. If there is a shop he can’t get into in his wheelchair, his wife can go in, take a picture of what they’re thinking of buying and come out to show him. Several people said they just had to be assertive and ask for help when they needed it.

Using a scooter gives her great freedom. She can get into most shops. When she got stuck in a…

Age at interview 66

Gender Female

Age at diagnosis 65

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I’ve got a scooter as well, which I haven’t used for a few weeks now, because they’ve had all the roads up and I’ve got to go on a special route because of the dips in the pavement. But that’s wonderful, because that’s freedom. Because however much your friends are good and take you out, you only see what they want you to see. But when you go out on your own you can meander and just browse at things, and you don’t have to sort of be hurried along. So that’s lovely. Yeah.

What do you do when you get to, say if you want to go into a shop, you get off the scooter or?

No, no. I can go into the bank, I can go to the building society, the card shop, the chemist’s, the stationer’s, and the big store. Most big shops you can go in and go round on your scooter. You can even go in the lifts. So it’s very good, yeah.

Yeah.

The smaller shops you struggle with.

Yeah. Either because they’ve got a step or because there’s just not enough space.

And you can’t turn round and come out.

Yes. You have to go into reverse.

Yeah, well I did in, in Timpson’s because I needed a new key for the back. And I got in and they did me the new key, and I said, ‘Well, you’re going to have to carry me out’, because I had to reverse. But it is a wonderful feeling of independence.

Mmm. Do you drive still?

No. Well, the problem was I had a little automatic car, and it’s my right foot that’s gone and that’s the one you use. And I thought, ‘If I caused an accident I’d never forgive myself. So I gave up quite a few months ago.

Have you thought about getting, because you can get hand controls?

Yes, but when I got to wherever I was going, I couldn’t get out of the car, because I couldn’t walk anywhere, could I?

Right.

So I thought, ‘Well, I’m better with my scooter really.

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If you explain your mobility problems and ask people for help they are usually very kind and…

Age at interview 57

Gender Male

Age at diagnosis 50

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I think people have been sympathetic. You know I make it quite clear that I’ve got problems or the problems that I have when I go into somewhere. A better example in a way would have been, would be the hygienist at my dentists. They’ve changed her now but when she read my notes which said, you know, I’m motor neurone disease and can’t use my arms. She was, I wouldn’t say horrified but she was worried that she couldn’t give me the suction tube to hold whilst she was cleaning my teeth. And I said, ‘Well we’ll try it and see how we get on. Her first thought was quite negative really. But as long as you, I mean people are amazingly kind if you let them know you’ve got problems whether it’s getting things from top shelf of Marks & Spencer’s or well helping you up when you fall over on occasion. I mean I haven’t fallen over for I think about five months but it does happen. It will happen again I’m sure. As I said in general people are amazingly kind.

The best thing you can do is to ask. Just standing there like a lemon looking at the top shelf lovingly is and waiting for a member of staff to come by you could be there a long time. So it’s quite a few helpful people in our local Marks & Spencer’s [laugh].

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Some people had experienced particular technical problems with wheelchairs, and a common complaint concerned getting a sufficient charge in the batteries for electrical wheelchairs. One man said his original 12 amp charger, which worked well, was replaced for safety reasons with a 3 amp charger and he’d had problems ever since. Another man explained in detail his technical problems.

When he couldn’t use hand controls, he was given a wheelchair with a chin switch. It is better…

Age at interview 60

Gender Male

Age at diagnosis 56

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This wheelchair we were using in Menorca, it was quite hard even with three people hanging on the back. So I started complaining a little bit about this and eventually they gave me a push wheelchair which has got brakes rather like a bicycle, which is much better. The only snag is it’s a little bit wider, so I can’t actually get it between the kitchen and the rest of the house, at least I can’t without a great deal of difficulty. It has to go at a very odd angle and we have to hold the door as wide open as it will go and it sort of scrapes through. So I don’t tend to use it. But it is an emergency one, and we’ve used it in emergencies. My occupational therapist and the NHS have been very good. And they provided me with a wheelchair before I needed it, which was good, an electric one. And it was rather like this one, only it didn’t have the front pivots, and it had a hand control. Well, a hand control wasn’t very much use. I used it for about six months, but my hand was getting weaker and weaker. And I wasn’t actually controlling it with my fingers, as you were supposed to. I was controlling it by moving my arms, which still had residual movement.

But by about a year ago I was getting to the stage where I’d go round a supermarket and I could only turn left. So I was going to the end of the aisles and doing a 270 degree turn to go right, because I didn’t have any movement to my right, and I was looking a bit foolish. And the other problem with the wheelchair was it was one which had four wheels attached to a solid frame but with no suspension’ If you have rigid wheels with no suspension attached to a very rigid frame, the moment one of the back wheels leaves the ground you lose all the steering. And this became a problem. I didn’t hit parked cars, but I was in danger of doing it. I was in danger of falling into the road. I certainly rammed it into walls because I tended to keep to the inside of pavements. And suddenly one of the wheels would lose steering’ And wheelchairs don’t go across gravel surfaces very well. They certainly don’t go across slopes very well and gravel surfaces. But this one would hardly do anything. It struggled to go through doorways where there was a lintel, because one of the wheels would be on the lintel and the other one would be flailing madly in the air, and the wheelchair would suddenly lurch sideways.

And I’m afraid I made a nuisance of myself, a very great nuisance. It was partly because I couldn’t operate it very well, but partly the design fault in the wheelchair. And eventually they gave me this one, which the people at the [city hospital], from Medical Physics I think they’re called, came out and they put this chin control on, which has been wonderful. People say, ‘Did it not take you very long to learn?’ Well, it must have taken at least five minutes. The only occasional problem is that it’s programmed to be the reverse of the way the hand-operated ones work, because it’s much easier to pull the chin towards you to make the thing go forward. So you pull it towards you to make it go forward and you push it away to make it go backwards, which takes two or three minutes to learn and then it’s obvious.

There are other controls on it’ I can vary the speed. So I can go right up by turning sideways, I’m now on full power, which give me about 4 miles an hour. Or I can go right down to low power, which I use sometimes when coming out of the car backwards, especially if the ramp is a bit sloping, because it means I don’t move very large movements at anyone time and I get more control The only thing I don’t have on this, which I had on my hand-controlled, is a horn. But since it was such a useless little horn, it was sort of a high pitched peep, people didn’t identify it as a horn anyway. Maybe it was quite good for passing bats, keptthem away, but people just generally ignored it. But I’ve still got my voice, so I can ask politely. Unlike a certain lady who goes down the back of our house and shouts abuse at people if they don’t hear her coming. She’s got one of these electric scooters. My wife, whos deaf, has been hollered at in a rather rude way on several occasions.

The charger on that, have you had any difficulties with the charger?

No. They gave us a small charger and we used that fine. And then they gave us a larger charger, which I decided I would swap back for the smaller one. So they took the large one away. Mainly because we carry it with us, and this thing was about, oh, I don’t know, 30 centimetres square. It was a huge thing, whereas the normal one is probably half that size. The only thing wrong with this wheelchair is, I live in a very hilly town, in winter it’s quite cold as well, and I don’t think this wheelchair gives me very great distance. In town, remembering that I live on the top of a hill and therefore I need to keep a certain amount of charge in the wheelchair before I set off back, I doubt if I’ve got more than about 3 miles distance.

On a flat promenade or somewhere on the coast and we do 5 miles, I can easily do that on the flat in warm weather. The battery doesn’t hold its charge very well in cold weather. You can travel around, and be right down on the emergency red flashing battery, come inside, and it will recover anyway. But it recovers dramatically as it warms up. It’s quite, quite disappointing in that sense that the battery won’t hold its charge. I think that’s just a problem with battery technology. I mean it’s a very heavy wheelchair, because it’s got two batteries, it’s got two driving motors and three other motors on it. It weighs I think about fifteen stone, 100/117 kilos, I can’t remember.

This one has what’s called a gimbal. I would have called it a pivot. And the front wheels are not on the frame, but they’re pivoted in the centre and the front wheels can therefore go up and down. And it makes such a difference.To be honest, unless there are reasons why you need one of those without this gimbal or pivot, they shouldn’t be supplied. They’re quite dangerous really, quite dangerous.

I mean the classic is that I’m delivered to the [city hospital] for an outpatient, and my wife takes me to the place where they say ‘Disabled Unloading. And between there and the Outpatients Department, which is the main entrance where I go in, there is a ramp, which is newly built for wheelchairs. And the first time I went down, that was in my old wheelchair, my wife drove off because she had to go somewhere to park, and I said, Fine, I can go down, the doors are automatic, I’ll go down on my own. And I got halfway down this ramp, which was concrete, and I hit an unusual bump on it. The left rear wheel left the ground and I rammed it into the wall. This was their newly built wheelchair ramp, which was quite steep, and not planar, you need a planar surface. And I had to be rescued by a sort of 15-stone, rugby-playing type, who very kindly hauled this wheelchair back and helped me down the ramp.

I had similar trouble on a wheelchair ramp going into the theatre. Well, I’ve had problems everywhere really. So this new one is much better. The only thing that makes it worse might be that it’s marginally longer. And therefore if you’re going down a narrow corridor and have to swing into a room, sometimes the 2 or 3 inches extra make it difficult.

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The MND Association has a Wheelchair Service that can help people access the right type of chair for neurological needs through statutory services and may be able to provide support with top up features. They also provide MND support grants for a variety of needs, including equipment that cannot be provided through health or social care. Some of these grants need to be applied for by a health or social care professional following assessment. For more detail, see the ‘Getting help’ area of their website.

They also provide a range of relevant information sheets to assist, including 11C: Equipment and wheelchairs and 12A to 12D on driving and travel.

People’s experiences of obtaining different types of equipment are discussed in more detail in ‘Aids, equipment and adaptations’.

Aids, equipment and adaptations for MND

Timely provision of suitable aids and equipment can make a major difference to people's independence and quality of life. Adaptations to the home may help...