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Motor Neurone Disease (MND)

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 similarly. People used many different aids and adaptations to help with personal care, sleeping, eating and mobility inside and outside the house.

Many people had been impressed by the way staff, especially occupational therapists (OTs), anticipated their needs and arranged for equipment or adaptations just at the right time. 

 

As an OT herself, she knows it's important to request equipment in advance. Her community OT has...

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Age at interview: 39
Sex: Female
Age at diagnosis: 38
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Again I think it is an advantage being an occupational therapist because I know how long these type of things take and because I know what my progression is. And I've also got a good, good idea what I can be supplied with I always requested them before I needed them. So by the time I got them I was just about needing them then. With my power wheelchair I requested it when I was still walking. Also because of the way I filled in the form I was automatically put to, at the top of the high priority but I still waited six months for my wheelchair by which time I needed it then.

You said you had the stairlift and the toilet seats and everything was there anything else that you have in the house that you, to help you carry on as normal?

Yeah. No at the moment it's just the raised toilet seat and the stair lift. I've got a perching stool in the kitchen so I can sit in the kitchen and watch others while they. I've got an attendant propelled wheelchair. The MND Association kindly provided me with an electric scooter that had been donated to them which is superb. It's a little one that collapses into the car and it's so much nicer to be, have that independence because I keep my electric wheelchair in work. Obviously that will come back home to, with me when I finish work. 

At the moment now we're just having an extension built downstairs for a bedroom and an en suite which is going to be a wet room with a special toilet in it, a special changing board, a hoist, an overhead hoist, ceiling hoist. And also in the bedroom we're going to make sure we've got all the appropriate electric adaptations for when I become worse so that it, there will already be the sockets for an electric bed. The ventilator if I ever get fitted one, my overhead hoist again so everything that I'll need can be fitted into there. So that's what we're working towards now. So hopefully again I'll have that already before I actually need it.

Is this something thought about, which you think about, what you need and is your planning for that or is there any, have you talked with any other health professionals and they've said you need to think about it?

Yeah I was referred to the community occupational therapist and obviously I realised that I would initially need to have a downstairs bedroom and a specially adapted en suite so that was her expertise, her special, specialism is in adapting homes. And so we sat down together with the architect and the builder to work out what dimensions and sizes we needed. You know with turning circles for wheelchairs, turning circles for hoists, the sort of things, the equipment that I would need in my bathroom. So I've actually taken all of my lead from the community occupational therapist. Unfortunately for her, her sister is towards the end-stages of MS herself but obviously she's that firsthand experience has helped me immensely as well and helped her to understand my needs.

 
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His OT is good at forecasting what equipment he'll need before he realises it. It's reassuring to...

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Age at interview: 60
Sex: Male
Age at diagnosis: 59
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My occupational therapist, who looks after my equipment side, is extremely good and she comes and sees me every three months and updates and upgrades the equipment that I need for the deterioration that I've gone through. And she's absolutely marvellous at forecasting. I don't want to face things, and then she sort of turns up with a piece of equipment for me, or she'll ring me up and say something and the piece of equipment will turn up two days later. And I sit it in the corner of the bedroom and think, 'I'll never use that', and within a week I need it. It's literally like that. Because you don't know' But she's absolutely marvellous. And she put our mind at rest. Because obviously I weigh 14 stones and my wife isn't going to be able to pick me up if I fall down. She can't wrestle me out of bed and that sort of thing. So what's going to happen, you know? And of course there comes my occupational therapist, like the Seventh Cavalry, with all the equipment that we're likely to need as we go through, and progressively she'll feed it in as we need it. So that side of it is a comfort and, and it breaks it down.

Some praised their OTs and other staff not just for arranging equipment and adaptations, but gently helping them to come to terms with symptom progression and to accept that they would soon be needing more help. This was hard for many people, because pieces of equipment or changes to their home could be a concrete and unwelcome reminder of their condition. (See also 'Personal care and care support' for experiences of bathroom adaptations, and 'Mobility, arm and leg weakness' for more on experiences of using wheelchairs). 

 

The occupational therapists have been key people in her care. They help her plan what equipment...

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Age at interview: 34
Sex: Female
Age at diagnosis: 31
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I think, I think a point that I would make is that as I mentioned to you before it's not the doctors that really make a difference to my life with MND. It really is the, the therapists. So it really is the OTs, primarily for me the OTs, and, and now the carers, really. And it's those hands-on people that day to day make my life easier and things more accessible. The doctors aren't - it's not that they're no use to me - but they're, they're not crucial in this illness at all. But the OTs and having a good OT and having a good relationship with them, really, I've been really lucky with the two OTs I've had. Having a good relationship with them is, is really good. And it, and it feels like, they've both made me feel like they're only working for me. And I can ask them for anything and, and they'll do their best to get it for me. And that I can try anything as many times or, you know, and, and that's really great.

Because they are, little things do really make a difference and open doors for you, literally, and, and make your life easier. And come up with suggestions. It's very difficult for them because they need to suggest things to me equipment-wise before I might want to face it, but before I'm struggling. So it's not easy for - I don't envy their position, it's not very easy. But having the guts to say, you know, 'Have you thought about?' certainly when I was first struggling with walking, 'Have you thought about a frame? You know, that would allow you to get over being able to take a drink through to the balcony.' I would have resisted that at first. But then it's plant a seed and then, and then, you know, 'Oh, okay.' Because otherwise you don't know what's out there. And so, and they're really that, that link. So you might be struggling on with something, yet they could just say, 'Oh, why are you struggling? You could, you know, we've got this little gadget or that little gadget.' And things, equipment does make a difference.

Several people said they resisted getting equipment or adaptations made until the last possible moment (see also 'Mobility, arm and leg weakness'). One woman (Interview 19) said:

“You get all these aids and they drop all these things off - do your best to battle with the one you've got. And then give in. I know it's giving in, but there'll come a point you'll have to move on to the next one… Battle on best you can, and do what you can with each one.”

Others said they preferred to get things organised in advance. One man said with hindsight perhaps he should have had more home adaptations made straight away rather than waiting until the moment he needed them.

 

Planning equipment and adaptations in advance was a way of fighting back. With hindsight it might...

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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We were also like planning stuff out and we tried to sort of like get a balance of that really. Because on the one hand you want to shut it out but on the other hand you have to plan really. And the other thing that I found is that is that if you plan for it and try and get everything in place and try and get your through floor lift and your hoist and the things that you need is something, it do you know so it's a way of like, like fighting back a bit. It's a way of - you're not in control of it at all but it's a way of, it's a way of being a little bit in control. 

And and finding out about getting all of those things was that something that was instigated by you or did somebody advise you?

Yeah, well we asked the occupational therapist to come round from the social services. And then she brought around an architect that the council employ whose familiar with sort of converting houses for disabled people. And so they went through all the different options. And we did think about making it so that I would live downstairs and we also looked at the option of putting in a lift so that I could go upstairs. So we made that choice quite early on because it's, because it's good to sort of it's not good to do it all sort of piece meal because if you go down one route and then you find you've shut off the possibility of doing something else. It's sort of good to plan it all in advance. So we did all that yeah. So we instigated it but we had help you know. Obviously we got expert advice off people. 

And then once it was decided to have a through floor lift and an overhead hoist, then you get the people from the companies to come in and then they give more advice. And so gradually you sort of put it all together where everything's going to go and how it's going to be fitted and all that kind of thing. 

And so you had some of those things before you actually needed them?

No we didn't really. We tried to get in advance some of - we tended to get things more or less, we had the plan quite early on but we didn't actually implement the plan until we sort of needed to do the different bits. So we knew quite early on that we were going have a through floor lift. But because we didn't really want a through floor lift because it takes up space and it looks ugly, we didn't actually get the through floor lift until we really needed it. So there sometimes when I was actually struggling or we were struggling to manage because we could've done things a bit earlier. But we tended to kind of just just in time do things, that's still what we do now really. So we're never, we're never totally lost but we're always kind of just on the last minute [laughs]. But that's okay. That's better than being too late. And at least we always knew what we were going to do. I mean on reflection probably if I was like going to have to do it all over again, I would just do everything at the beginning because it's easier. You know the bathroom conversion, the access outside, the lifts, the hoist and that. I'd just get it all done at the beginning because once you've done it all once then you don't have to keep, you know bothering about it, where as by doing it bit by bit you're constantly...

It's time consuming?

It's like having another job to be honest.

Alongside the many positive experiences of getting aids and adaptations, there were also many criticisms. A common frustration was bad timing - often people felt they had to wait too long for assessments, for decisions to be made, for equipment to arrive or work to be done. Especially when someone's symptoms were progressing fast, it might already be too late by the time the process had been completed. 

 

It can take a long time to get equipment or care in place so you have to anticipate future needs....

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Age at interview: 58
Sex: Male
Age at diagnosis: 56
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Yes, certainly the, one of the biggest problems is that it takes time to set things up. I mean it's the same actually whether you're talking about acquiring aids or about arranging care. You have to anticipate where you're going to be in a, in a few weeks' or months' time, rather than sort of asking for something now that you need now. In the case of setting up the care for example, what we found, and obviously this is just our experience, is it could, it can take six weeks before something arrives. And with a condition like this, you know, things could have changed by then, your needs could have changed by the time you get something.

That's one way you've managed the, the progressive side of it. Is there any other ways you've managed to deal with the progressive side of it, to cope with that?

I suppose some of the time one, one, one, I suppose the hardest part about dealing with a progressive condition is that you know that you're going to deteriorate, you have no idea what the timescale is. And I think, I've certainly found it has been necessary sometimes to think, 'Well, it's probably not worth pursuing that particular avenue'. Because by the time I get something, either my needs will have moved on, or they may, that may no longer be particularly appropriate. Look, something that looks appropriate now, but will probably benefit you for so little time, is not worth pursuing.

Sometimes people complained that the system lacked flexibility and choice, and that sometimes advice was incorrect or inappropriate.

 

One occupational therapist told her she could not have a ramp and she'd have to move. A different...

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Age at interview: 45
Sex: Female
Age at diagnosis: 37
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It was quite hard in the early days. I was told initially that I wouldn't be allowed to stay in this property, that it, it couldn't be adapted, that it would cost too much, and that it was, it was too big a drop for a ramp, and I couldn't have one. But in the end they wanted me then to go into council accommodation. But at the time the children were both at school, I couldn't be guaranteed accommodation in this area. And then I asked if I was to move into council accommodation, what would happen to that property in the event, well, when I died? And I was told that the property would have to go to someone else who was disabled. So therefore effectively I'd be making the children homeless. So I decided that I would stay where I was, and cross that bridge on that occasion. But it took a good eighteen months of arguing with a particularly bad OT at the time, who said I couldn't have a ramp, and I couldn't have an outward-opening door with an intercom, and I couldn't have a stairlift.

And it took eighteen months of various [inaudible], but eventually I persuaded her to get a builder out and do an estimate to find out that it could be done. I've now got a different OT, who's absolutely brilliant, and no problem whatsoever. The bathroom was done really quick. I've had quite a few falls in the hall, and I knew I could get, we needed something at the top of the stairs, but how to do that I wasn't sure, especially with having a stairlift. And she came out and she said, 'I really don't know if anything can be done.' But, and she took photographs, went back into the office, and I think the previous OT would have stopped it at that. She made some phone calls, asked around. She said, 'I'm passing it on, I don't know what to do.' Two guys came out, measured up, and I've now got a gate. And I do, I feel a lot safer. And when I needed the hospital bed it was instant. My sticks, my trolley. I fell and broke my hand and she was straight out with extra, offered me a care package, extra cushions, because I was sitting for long there. And she's been absolutely amazing.

Some said equipment they did not want turned up unexpectedly, or things were provided without discussion of whether they would be useful or suitable for the person concerned. There were some complaints about items that were badly designed or poor quality. For example, one man had been given a grabber, but 'it's about 2 feet too short… I've got to bend over to even pick things up.'

 
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Equipment is sometimes poor quality - she was given a shower seat which went rusty within days....

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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We've had the occupational therapists here'the trouble is they're not very - now, let me see, how should one put this? They're very helpful and they'll offer you things, but the quality of what they offer you is so poor - which is ridiculous really - that you just in the end say, 'Don't bother.' They gave me a seat for the shower, which went rusty within like two days. And there was just rust in the shower. So I rang them up and I said, 'Well, this seat's rusty.' 'Oh, okay, we'll give you another one.' So they gave me one which was exactly the same. So that was just totally pointless. And they sent somebody out to put a handrail on the shower wall before they'd even assessed whether we could have a handrail on there. Because it's not a solid wall, so that it couldn't go on there. So they try to be helpful but they're sort of a bit wasteful of resources.

And did, where did the things like the trolley and the wheelchair come from?

Well, that Zimmer frame came from my physio, she got me that. I have a wheelie trolley that I can wheel food about the kitchen. That did come from the occupational therapist and that is absolutely brilliant. I have a chair which I sit on in the kitchen, which I actually bought from a charity shop for a tenner. And I have another Zimmer frame, which a friend from the gym gave me when her father died. And I have to say that, with regards to disability equipment, I find it amazing that you can't find second-hand equipment somewhere. There must be somewhere where there's a huge pile of second-hand disability equipment. Because this little three-wheeler walker or Zimmer frame, whatever, that this friend gave me, she couldn't give it away. Her father died and she tried to give it to all sorts of people and they said, 'Oh, don't want that.' So she said to me, 'Pauline' - this was before I knew I had motor neurone disease - but she said, 'Without being rude, Pauline, do you think you could use this?' And I said, 'Oh, yeah, thanks very much.' And I've had it for about three years. And it's brilliant.

Occasionally people felt they were given things too soon, before they really needed them, and had them cluttering up the house.

 
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He was brought a lot of equipment he hadn't asked for and didn't want. Most of it is in the shed.

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Age at interview: 73
Sex: Male
Age at diagnosis: 68
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I got this stool, which is about 3 feet high, for a shower. I mean the whole point is I can't get in the bloody bath for a start. So what on earth they've given me a stool to put in the bath for, I don't know. It's absolutely ridiculous. Then I've got another, a small one for this and that. A thing to go on the loo, which I don't need. And I told them when they bring all this stuff. I mean, when they turned up with it all first time, it was a vanload, bits of this and bits of that. And it's all unnecessary. They should give you something directly to start with that you can actually get on with and do. Like I have this electric lift in the bathroom' I bring it up to the level with the top of the bath, I turn round, sit in it, turn myself round, lower it down, I'm up to here in water.

So that's been a useful aid?

That has been the only thing that they've given me - oh, except for the wheelchair obviously, they gave me a wheelchair'

Right. Has anybody ever come and said, 'Do you need it? Or shall we take it away?'

No.

So you've got it all.

It's all in the shed.

While some people preferred to let their OT suggest and choose equipment for them, others wanted to be involved in discussing what would be best for them as individuals, perhaps browsing catalogues for themselves or being told more about what was on the market. Some chose to do their own research, for example looking on the internet or going to disability equipment exhibitions to inform themselves. As one woman pointed out, “You don't have to accept just exactly what you're offered.” However, several said they had often stumbled on useful information more by chance than design. Some improvised their own solutions, including one man who had worked with his OT and physiotherapist to design his own neck brace. Several people felt rules and regulations sometimes got in the way of sensible solutions. One man was angry that he was told he could only have a profiling bed downstairs because it was too heavy to go upstairs, despite an architect's advice that it would be fine. 

 
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They waited weeks for some equipment and assessments, but a bath seat arrived which they didn't...

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Age at interview: 40
Sex: Female
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In fact while she was still living down the road here in her own house, she had an assessment done of what might help. There were very steep stairs there, and an upstairs loo. There was no downstairs loo' but it took weeks for that to come through, so long that we'd actually decided by that point that she wasn't going to go on living there, and that a new assessment needed to be done here. And so at that point I think there was a decision made to put a handle at the top of the stairs here, just because you can actually fall down the stairs if you were to trip and it seemed sense to have something to grab onto just going round the corner. And a bath chair arrived, one of these rising jobs. It actually was far too soon for that, and once you have one of those in your bath they're incredibly heavy. You can't actually get in a bath and relax, which is really what baths for women often are, and the thing was just a pain. And Mum was very fit and in fact she had good muscle control in her legs and she didn't have a problem getting into the bath or swinging her legs round or anything like that, so it was really an inappropriate device to come with. And I didn't ask the question which is of course, 'Are these things at a premium? So should we be very grateful that we've got this now?' which would've been a sensible question to ask. But at that point I was very na've in my approach to everything and you just sort of thought other people knew best, and was prepared to take anything they threw at us, and Mum was the same. So we dutifully left this thing in the bath. It's also huge so it's quite difficult to put it anywhere else. And so that was that, really. At the time, she was just walking with her own stick, just one, and we had nothing else. 

One of the things that seemed to be quite difficult was actually getting in and out of the car, and I asked about swivel seats and things like that for the car, and was told that that wasn't something that they had any information on, really, and that because it didn't come in their budget it wasn't a concern. If I wanted to do something about it there was a conference taking place on travel, and they suggested that I went and spent the day there and it would be very helpful if I could write it up and report back to them. So I didn't go [laughs]. So that was that.

I had been asking for quite some time about things that would help make writing better, or easier, because Mum was getting muscle wasting between her thumb and her first finger and it was getting tricky to hold knives and forks, pens, those kind of things, toothbrushes. And I must've asked about five or six times the occupational therapist what companies were reliable or were there magazines or mail order catalogues that one could look through. I think those probably turned up about nine months into Mum's diagnosis. You know, they were very straightforward and simple things to get hold of. And I just thought how ridiculous, and I was just adapting everything I could adapt in a way that I thought might work, but some things are so much easier if they're actually made for the purpose. So that was a source of immense frustration, really, for me.

So I asked for a wheelchair. I was told that wheelchairs were phenomenally difficult to get hold of. This is actually to get one in the home rather than just for us to hire one. There was a long waiting list. I asked whether motor neurone disease had any kind of priority and they said, 'Well, it depends county to county.' And I thought, 'Well, you must know, you're actually working within this county.' The wheelchair just didn't turn up, and we went to Mum's GP and I said, 'You know, it's a source of frustration for me, I've been waiting for this wheelchair for a long time and although Mum is quite happy to walk down the street to the gallery, it’ll limit the amount of time we can look at pictures because she’s lost the energy on the way.” Her GP made a phone call that minute and by the time I got back here the wheelchair was here. So that said something to me.
 
Why do you think it had been so difficult?
 
I think it was just bad - or lack of - administration on behalf of the occupational therapist. I think she just didn’t follow it up, if she even put in the request in a timely fashion. I don’t know the answer to that but it seems extraordinary that your GP can ring and it can arrive that very afternoon.
 
 

Her husband has improvised solutions which are cheaper and more convenient than the official...

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Age at interview: 58
Sex: Female
Age at diagnosis: 55
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We had to have a bathroom revamped. This house has a change of level of one foot, that's two steps. And both the bathrooms are up those two steps. So we had to work out a way of getting up those two steps once I couldn't walk or when I was having difficulty walking. So we were being helped by the [local] Disability Resource team and hopefully we thought we'd be able to get some help from that. But in fact the professionals have to give you professional advice, which means they have to give you advice which conforms to all the rules and regulations. And they have to have ramps of a certain level, a certain size, and they can't really give you advice which would be, as one of them described it, 'A Heath Robinson affair'. So they suggested that we should have a stairlift to get me up two steps. And a custom-built stairlift to get you up two steps would cost over '4000. So it wasn't a good solution. My husband reckoned he could do it better, and he decided to build some ramps and to buy a little shopping trolley, a shopping scooter, a three-wheeled shopping scooter, which would get me up those ramps. And it's been a very good solution. So the professionals can only go so far with you and they can only recommend things that are in their domain. And sometimes you have to rely on friends and relations to make a more, do a bit of lateral thinking and find something more appropriate for you. So that worked.

Has there been anything else within the house?

We've had the bathroom adapted to make a wash-, a flat area, a wet room. And that's been good. I now have a little seat that can be rolled over the loo and rolled under the shower, and I can just transfer on to that myself. And so that's worked quite well. Again the advice from the professionals was simply to adapt a little bit of the bathroom, not to have a full revamp of the bathroom. I think they have to try and save money. And again it would have been an unsatisfactory solution. So we had to go for the full change of the bathroom.

So you've had to cover the cost?

It was expensive, yes. We did get a grant from the Motor Neurone Disease Association, which was a help towards it, which was very nice of them. Other than that, there's little things that have been useful. I have a mobile arm support to help me when I'm eating. And that's very handy. I can still eat, even though my right arm is now very weak. I can still feed myself a full meal, which is great. And the other thing is transfer boards. Now that I can't stand up any more I need little boards to transfer across. And some of the transfer boards are naturally made to take a heavy person. So some of them will take a 17-stone man, you see, which means they're big, heavy boards and I can't move them myself. So again we've had to be innovative and make smaller ones, simply just to slide you across from this seat to the toilet and things like that. So they've been quite useful.

Where do you get those from? Where did you get them?

My husband made them. He said, 'I've got a bit of old wood in the garage. I'll get it out and see what I can do with it'. And so he's done that. Also he's built ramps in the house and in the garden so that I can get around.

And the, the armrest, where did you get that from?

Oh, that was supplied by the hospital, by the physio department in the hospital. I think they were doing an assessment of it as a new provision. And they did ask me to fill in a questionnaire to see what I thought. It had to come complete with a chair, because it has to be fixed to the back of a metal-framed chair. So that came as well. And you get an awful lot of chairs in this business. You’ve got to have a chair for the shower, a chair for the arm support, and then I’ve got two wheelchairs, two scooters. And you just end up with so many extra bits of furniture that we’ve had to put an awful lot of our furniture up in the loft, out of the way, just so I can get around the house. So it does affect the house in that way.
 
One of the things that I’ve heard is that a lot of this equipment comes at the beginning, when it’s not always needed and it’s getting the timing right.
 
Yes, well, yes, my occupational therapist is very good. And she suggests things and says, “Well, we’ll just try something, Judith. If it’s not right, I’ll take it away again”. And she’s very good about that. She’s very, very committed to motor neurone disease and she’s very helpful. So I do like that. The one thing that was never suggested to us was to get a little shopping scooter. And that has been the best thing, because the armrests on some of the wheelchairs are very difficult to move. This has easy little armrests that you can just flip up out of the way. And I can now transfer myself from this, whereas I couldn’t if I were in an ordinary wheelchair because the armrests are too heavy for me to lift. So that’s another thing that’s useful.
 

He found wheelchair services unhelpful and inflexible, so he did some research and bought his own...

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Age at interview: 45
Sex: Male
Age at diagnosis: 42
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Yeah, well we first, we got in touch with wheelchair services, which is part of the NHS and we didn't get on very well with them. They wouldn't, they wouldn't meet the needs that I was saying. They would only do things according to the pattern that they had got worked out. So, for instance, when I was first in touch with them, well the first thing I got in touch with them about was just to get a, a wheelchair that could be pushed. So that if I was going out somewhere and there were long distances to walk, somebody could push me. And we did eventually manage to get one out, one out of them for that. We didn't actually use it that much but we did use it in some places.

And then the next thing that I wanted was, because I couldn't walk long distances, but I could still walk short distances, I wanted a wheelchair that would go outside the house. But I didn't particularly want to use a wheelchair inside the house at that point. But they said they wouldn't do it that way round. They would only provide me with a wheelchair that would go inside the house first and after I'd had that for a bit, and they wouldn't say what a bit was, after I'd had that for a bit then they would look into ordering me a wheelchair that would go outside the house. And then that would take blah-de-blah to come and so on. So, to actually get what I wanted I would have to go. And also I couldn't have the wheelchair for inside the house because before we, we would have to get some work done on the house and get extra doors knocked through and stuff. Because they were saying that in any wheelchair they would provide would have like a really big turning circle and it wouldn't be able to go through our doors.

So, basically, to end up getting a wheelchair, and we would have to do a load of work outside the house as well. So to end up getting the wheelchair that I wanted I would have had to, we'd have had to do loads of work, then we'd have had to get a wheelchair that I didn't particularly want and then, and then eventually they would have given me the wheelchair that I did want which is one that will go inside and outside.

And when we sort of said, 'Well this is not reasonable', they said, 'Well we don't even have to give you a wheelchair at all if we don't want, we can wait until you can't walk at all, because that's our criteria.' So they were like, they were just very unfriendly people really and very unhelpful. And we just sort of thought straight away they just don't want to give us anything, even though I've got an illness, where everyone knows I'm not going to be able to walk. They just want to spin it out as long as possible. So I decided to buy my own wheelchair and that was the best thing I did really, because everywhere I go people sort of say, 'That's a really good wheelchair' [laughs]. You know, other people I meet with motor, motor neurone disease. Because you actually need, not the chair that goes inside and outside, you also need a chair that, you know, moves properly. So that you can get comfortable, because I can't move out of this all day. I have to stay in this chair [demonstrating chair movement]. And I have very little strength in my body so I needed it to be able to move around, just to get, to able to reach things and stuff. So this, this chair's a better chair than you'd get off the NHS anyway and I would have had to wait for ages to get it on the NHS as well.

And where did you find out about that chair? Did you find it '

Yeah, well I went on like, Internet sites and I asked people with motor neurone disease what chair they'd got. And well all the Americans were saying is these Permobil chairs are the best. I think there are some other good chairs around as well but they were all saying for motor neurone disease you’re better off with a Permobil chair. So so then the wheelchair people came over and we also had a look at Invacare as because that’s an alternative company. And we thought this one was the best so we got this one.
 
And it’s been great?
 
Yeah, it’s good, yeah. Yeah. It’s just a bit, it’s a bit it’s not perfect [laughs] I could design it a bit better myself but it’s pretty good. It’s a bit flimsy on the top. The motor’s and everything, it’s very reliable but the sort of construction of the arms and things is a bit sort of amateurish which is a bit strange. It doesn’t quite fit with the rest of it. But, yeah, it’s a good chair.
 
OK. What about other things that the OT provided? What else have they talked about providing?
 
Well we’ve got hoists. We had to buy those, though. Everything’s means tested, means tested. So when I was diagnosed I was, obviously I was at work and my wife was in work, both full time work, so I, we had a small amount of savings which is actually, we’d saved up in order for my son to go to university. So when they means tested us they said they’re not going to give us anything for any of the stuff. So we’ve had to buy the wheelchair, the hoists, the lift, the outside access, the bathroom conversion. We’ve had to pay for all of that ourselves. And the only way we could have got round not paying for it would have been to both give up work, which is like, my wife’s career would end then as well, and sort of live off benefits and stuff. And then, you know, we’d be poor enough, but then of course we’d have, we’d be in their we’d have to wait for things. Because that’s, that’s the other side of means testing, is you either have to pay for it which is, the good thing is you can get it when you want it, or you wait for the social services to get it for you which means you have to wait according to their budget priorities. So it’s bad for everybody, the system that exists at the moment. So, so in terms of, they provided us with lots of advice and lots of help in choosing and the OT’s been great about that and they provide you with like small things like, you know, like a fork that’s a bit longer so to help you to eat when your hands are weaker. Anything that’s quite small. The most expensive thing they gave us was a shower chair, commode, and that was £600. But I mean, we’ve spent tens of thousands and they give us stuff that’s worth about a thousand [laughs] altogether.
 
But they have their, their advice has been very useful. So I wouldn’t say to anyone not to go to them because they give lots and lots of free advice and that’s really helpful.
 
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He asked a local mobility showroom if they had a kneeler for his wife to work in the garden. They...

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Age at interview: 73
Sex: Male
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Everything we've done we've managed ourselves. As I said, my wife is very independent in that way. So every time I suggest anything, she says, 'No, we'll manage without.' I don't think you should do. I mean for instance we've got this mobility showroom over the road. Actually we're lucky, I can just walk over there and ask them. I had this problem with my wife gardening, with her kneeling down and everything. I went over and I said, 'Well, I know there's a kneeling stool or something. Perhaps they may have one.' So I walked over there. They said, 'No, we haven't. We've got a catalogue here. I'll look it up and see.' And lo and behold he said, 'Well, the garden centres would sell what you need.' And so off I trundled to the garden centre. So I mean that's a little help in that that problem was solved that way. And so I'm grateful that we've got that close by.

Many people had to pay for most of their equipment or for adaptations to the house. This is explored further in 'Finances and benefits'. Sometimes people had chosen to pay for things themselves to avoid a long wait, but others had to pay because they did not qualify for means-tested assistance. The physical constraints of the way their house was designed could raise costs still further, or rule out some possibilities. Some people felt the government ought to meet more of the costs and felt they had had to fight to get what they needed. There were many positive comments about advice and financial help for specific items provided by the MND Association, but several people felt the Association should not have to fill this gap. 

 
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Their staircase was too awkward for a stair lift so they moved the bedroom downstairs and had a new bathroom. It was a long and costly process, but the MND Association helped. [Ken is unable to speak].

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Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Our dining room is now our bedroom, because Ken was finding trouble getting up the stairs. We toyed with a stairlift, but because our stairs curve it wasn't practical, and there was nowhere for it to go when we got to the top of the stairs because there was a door. The doors are quite wide, but when you get to the top of the stairs it curves, which makes the lift more expensive, because it has to be made. And of course it goes on to our bathroom door, and equally at the bottom of the stairs on to the lounge door. And it has to go past the stairs. So we had to scrap that idea, didn't we? So we decided, we took all the dining room furniture out. Luckily we've got a separate dining room. The occupational therapist lady got Ken a special bed. So we bought me another, an ordinary single bed. And we decided to have a shower put in. The occupational therapist thought that they could get it done on the National Health. But it was an 18-month wait, which we haven't got. So we decided we would buy one ourself. So Ken got on the websites and looked them all up. But of course none of them will give you prices until you actually ask them to come out and visit. Then we decided perhaps the best idea would be a sit-in bath. Which again, trying to find prices on the website was becoming a bit of a nightmare. So in the end I sent off to three companies that advertised in the paper and got all their brochures. In the meantime of that all happening, Motor Neurone [Association] said that if we got the price that they would pay, contribute towards it. So Ken chose which one he thought was best for him, and got them to quote us a price eventually, which we told the Motor Neurone people. And we have a plumber in the family and he said he would fit it in cheaper than the bath people would. Motor Neurone people said that they would pay for the whole lot, which was very nice of them. But I should think all in all from trying to get leaflets and getting prices and actually ordering the bath, the company wouldn't order the bath until they got the money. And although they were a very helpful company, they were very nice, and the Motor Neurone people paid for it as soon as they gave us a price, I should think all in all it must have taken a good six months to get it up and set in, which luckily Ken was still getting upstairs to the bathroom. And we've got a walk-in shower, which made it easier for you, didn't it? But it was the getting upstairs was the hard part'. So now we sleep in the dining room. I still call it the dining room. It's hard to call it our bedroom, isn't it? That's made life a lot easier now.
 
 

She recently heard about through-floor lifts which might suit her house better than a stair lift. You have to be determined to find out what's available and it's expensive.

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Age at interview: 59
Sex: Female
Age at diagnosis: 56
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As long as I know the person to go to, I think that's half the trouble. But again that's quite useful, because I'll ring the MND clinic and I'll say, 'I'm thinking, well, beginning to think about lifts. Who should I talk to?' But it is a question really of trying to find things out for yourself, I think. I hadn't even heard of these through-floor lifts until recently. And I don't know how I picked up that there's a possibility. And we were thinking stairlifts and the Social Services lady said, 'It's going to cost a lot because you've got a stair with a bend in it'. And I thought, 'I don't want to spend a lot of money if two months later I'm at a situation where I can't transfer from the stairlift to the next chair'. And then I suddenly thought about these through-floor lifts. And I thought perhaps you had to live in a palace to have a big staircase that could go up and down. But the coordinator at the clinic said, 'No. They cut a hole out of your ceiling and you go up and down'. So I thought, 'Well, our house can probably cope with one of those'. And somebody's coming out this week from Social Services to advise me about it, and we'll follow it up from there. So you have to stick at it. And I feel very sorry for people who don't, who are too ill to stick at it, or who don't have family who will stick at it for them. Because you do have to, not fight exactly, but you have to be determined, yes.

Persistent.

Yes.

And that's something it's bad enough dealing with the illness.

Yes.

Never mind.

And also I suppose in some ways, I mean we're in the fortunate position that we're financially secure. We're not rich, but we've got two pensions coming in, grown-up children off our hands and we own the house. If I had to wait for a Social Services grant for these things, I think I probably would have popped my clogs before it came through. I think that is a real concern for a lot of people with MND.
 

Many people were happy with the equipment and advice obtained privately but it could be a matter of luck - for example one couple had found a swivel seat for the car on the internet, but when they went to their local garage to arrange it the garage staff managed to obtain a seat and fit it for a third of the price. Several people felt private suppliers could charge high prices, and some found alternative solutions, including second-hand equipment and loans. It is important to bear in mind that few private suppliers will have enough experience and understanding of MND to help them advise customers appropriately, so an assessment from a health or social care professional is a good idea.

A range of car adaptations are available both to help people keep driving for longer themselves, and to be a passenger. Motability and local Mobility Centres offer help with driving assessments and car adaptations. Many people were positive about the advice and help received in relation to driving. However, it is vital that people disclose their diagnosis to the DVLA. This may lead to a medical assessment to determine if they can still drive safely and if agreed, this will be reviewed over time.

 

Driving was everything to him. He had an independent assessment of his driving and got the car...

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Age at interview: 60
Sex: Male
Age at diagnosis: 59
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I mean, my driving was everything to me. One, I couldn't go to work unless I drove. And legally, when you are diagnosed you must inform the DVLA, and write to the DVLA and tell them what your disease is. They send you back a pack, then, that you have to read through and fill in, and you have to describe your disability. In my case it was my right leg. I'd lost quite a lot of use out of my right leg at that time, although I was still sort of mobile and not wheelchair-bound or anything. This was right at the, when you're diagnosed. And I was terrified because it was my manly, macho image was about driving, you know. You drove, nobody drove me. I drove. And I really wanted to keep driving. So rather than wait for things to happen, I filled in the appropriate forms for the DVLA describing what was wrong with me and sent them off, and then went on the Internet and found that Mobility, actually you could book a test with them and they would assess your ability to drive. They would then take you out in various cars to overcome your disability. So in the course of, I think, it was about two hours that we did a, an assessment of my physical capabilities.

We then went out, and they had me driving a normal car, if you like, but this car was actually fitted with all sorts of extras. So once they'd established where I was in terms of driving a normal car, we then changed it to a hand accelerator and brake. We then changed it to a left-handed accelerator pedal with an automatic transmission, which is what I ended up with. That's what I needed, because my left leg was still okay but my right leg was shutting down. So I had my car modified so that I could drive with an automatic with a left-hand accelerator. But that wasn't immediately. Obviously I had the assessment done, then I got the results of the assessment back and forwarded it to the DVLA. So the DVLA, rather than having to go to my consultant or doctor, who, I didn't know whether they would say, 'No, he can't drive any more' and that would be it without a licence, and that would have terrified me, or they would say, 'No, he's okay'. You don't know. So I actually pre-empted it by having the assessment done. And I knew what was in the assessment, so I was quite happy to forward that to the DVLA. And I paid for it myself, it cost me '80 to have done.

The DVLA, because it comes from an accredited source that they're used to seeing, accepted that, that I could carry on driving, providing I altered my licence to one that was an adapted accelerator on an automatic vehicle. And that's what my licence now reads, that I can drive a, a vehicle, providing it is an automatic with an adapted accelerator. And the adapted accelerator can either be hand-operated or foot-operated. I then had my car modified so that it's got now two accelerator pedals, although you wouldn't notice it. And when my wife drives, it's like a normal automatic. You've got the brake pedal in the middle and the accelerator on the right-hand side. When I drive, we, there's another accelerator pedal, which is under the dash. You push that down. If you push that one down, the other one goes up, so you haven't got two accelerator pedals sort of in the floor pan, and then I can drive the car. And then when I've finished driving it and she wants to drive it, she just pushes her pedal down and the other one goes up out the way. A tremendous thing. But you don't know these things are available unless you make an effort to actually go out and find them.

And that kept me driving. And it's absolutely wonderful, because it gives you your independence. I'm pushed around in wheelchairs, I'm on sticks and what have you to move, and move about, but when I sit in that driving seat, because I can still, my left leg is still reasonably good and I've still got the necessary movement, I'm as good as everybody else. I can still drive safely and I’ve still got that independence there. And that’s important. It’s all about quality, it’s about independence and I suppose about vulnerability. You know, it stops you being vulnerable again. Because I work in the country, it means that I would have had to, if I wanted to continue working at that time, I would have had to have people take me to work and bring me home. Because of - yes, there’s a bus service, but it’s once every two hours, you know, which is no good for going to, to work and coming back from work. And it gives you that independence, you can still be - and as I say, it really makes the difference in your life, because I’ve driven all my life. Driving was a massive part of it in the latter years, when I gave up real employment as I call it, and sort of took a step back from business. And I, I had a wonderful job, a job that, you know, it was more hobby than, than work, although I got paid for it, which was demonstrating very expensive motor cars to people and taking them through the latest technology. Because I’ve always been interested in it, it was not a hardship. It, it’s, you know, my interest. It’s like having a hobby and doing it for a living. So it, you know, it’s all those things that, that make it really worthwhile.

However, some had had difficulties. One woman who wanted to have her car adapted for hand controls said no-one told her that the car she originally leased through Motability was unsuitable for hand controls and it took 3 months to sort out.

 

She's disappointed with the car she got through Motability - she was advised it would be suitable...

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Age at interview: 58
Sex: Female
Age at diagnosis: 55
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And probably the main grouse I have is the Motability car which we got, which I'm not at all satisfied with. It's a Renault Kangoo, which is designed to be wheelchair-accessible. And I was assured by the salesman and by the person who came to talk to us about it that the floor was lowered, that I wouldn't need a window in the front of the roof to be able to see out of, because the floor was low enough to let me see out. And that was all untrue.

When I'm in the Renault Kangoo, I can see people from the waist down walking along the pavement, and nothing else. And that's really very frustrating. I can see the road surface all right, I can see when there's ramps coming up, but I can't see any of the countryside or the houses or anything like that. And you just feel like a monkey in a cage, really. It's very claustrophobic when you're up in the top of one of those vans. And I do wish that we'd been advised better. I did ask on the MND website, and they just gave me a list of stockists. I asked if anybody at the DDA had any advice to give, and again they said, 'Well, you know, you've got to work it out for yourself' more or less. If I'd had somebody else with motor neurone disease saying, 'Don't get one of those, go for something else'. Because another thing is that, being a van type thing, it's very, very bumpy. And as I've got a weak neck, it's absolute murder going over country roads. And my head is jumping around on my shoulders and I have to sort of cross my arms over and hold myself into the machine, into the chair. And it's absolutely horrible.

So at the moment I can still transfer into the passenger seat for long journeys. And we take a blow-up cushion and that can be quite comfortable. But for short journeys where you're just putting in the electric chair in and out, it's only bearable for twenty minutes. I've not gone on a longer journey. That's a disappointment, really, I think. I was very disappointed in that. And it's such a cumbersome process getting people to come up and show you the machine. And you have to wait while they get a suitable one in, and then they haven't got a suitable one, so, 'Would you accept one that isn't quite what you wanted? If not, you'll have to wait another three months.' So you say, 'Yes, we'll accept that one.' And then it's not right. Oh, it was just a horrible experience. So I wouldn't, I'd recommend the Motor Neurone Disease Association or somebody gives a lot more proactive advice on what people should get for Motability.

(Anyone who is unhappy with what has been provided through Motability can ask for a reassessment).

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. See their information resources on their website.

Many people also find it helpful to contact other people with MND to exchange practical hints and tips and about specific pieces of equipment and improvised solutions. (See 'Support groups and meeting others').

Experiences of computers and communication aids are explored in 'Speech and communication'

Last reviewed August 2017.
Last updated August 2017.

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