People who had difficulty walking because of a spinal cord injury, limb loss or brain injury often used aids to help their mobility. These included wheelchairs, prosthetic limbs, Zimmer walking frames, crutches and walking sticks. People with visual impairments used long canes and/or guide dogs to help them get around.
Some people we talked with were probably going to be using a wheelchair for the rest of their lives. Others learned to walk again unaided, used another mobility aid such as callipers, or used their wheelchair intermittently.
He learned to walk again using a Zimmer frame and progressed to walking unaided.
He learned to walk again using a Zimmer frame and progressed to walking unaided.
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So you were using the wheelchair and then you progressed to the Zimmer frame?
MmHmm.
What was it like the first time that you started to walk using the Zimmer frame?
Well it was pretty scary, but I had no falls or anything. So I guess that’s good.
And so after the Zimmer frame came the stick?
The crutches. And then one crutch, and the stick. And now sometimes my sister and brother-in-law they take me out for a walk, and I don’t take anything.
And now can you walk quite far without using your stick?
Yeah, well I sometimes walk all the way down to the park down the road. That’s about fifteen minutes’ walk and I go there and back.
Wheelchairs
Wheelchairs represented independence for some people we interviewed. They began to use wheelchairs in rehabilitation, where physiotherapists helped them to learn relevant skills. They also attended courses to learn how to use their chairs to get up ramps and kerbs.
Getting into his wheelchair for the first time after his amputation showed Bill that recovery was...
Getting into his wheelchair for the first time after his amputation showed Bill that recovery was...
Age at interview: 57
Sex: Male
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Bill: They got a wheelchair and the independence of mobility again was, was amazing.
Catherine: In the wheelchair.
Bill: In the wheelchair yeah. Just being able to control what you do again in life. You, you lose control and when you’re totally reliant. I feel very sorry for people that are quadriplegic or, you know, very badly paraplegic how, you know, if they are reliant on people to do things for them. It is so demeaning, you know. I can understand now, why disabled people will totally and utterly reject help unless it’s absolutely necessary, because you’re better [laugh] to try and do it yourself, because you’re trying to think through the problem and it’s, sometimes the problem is insurmountable. Which is fine, you know, you have to get in your own mind, past that as well. You’ve got to accept the help that is absolutely necessary and for a lot of people that means a lot of things, and for some people it means nothing. It’s all your own particular personal journey in getting to where you’re going.
Yes, so tell me about actually getting the wheelchair and that process.
Bill: Well the physio got the wheelchair.
Catherine: She measured you up.
Bill: Yes, I mean whatever the technical things. You get the wheelchair and there it is next to the bed. And first of all you, you’re wheeling around the ward because you have to comply with what they want you to do, I thought, I was so naughty, I was so naughty I’m pretty sure I said I’m just going out of the ward, just, just going down the corridor, you know, through that door, and they went, “Yeah, but don’t go very far.” I went, the hospital was enormous. I won’t mention it, but it was a very large hospital. I just wheeled and wheeled and wheeled and wheeled. I was trying to find the outside and it was really difficult to find the outside, but I found it eventually and I was still really weak from – this is like may be, I don’t know two, three days after the amputation.
Catherine: No it was a big longer.
Bill: Was it a bit longer? I can’t remember the exact time. But I was still very weak. It took time to get your strength back, but I remember being so out of breath and so, but I felt elated when I got to where the buses drew into the hospital grounds. And I thought…
Catherine: Bus to [place].
Bill: I could get on that bus. I decided against it. I may be naughty, but I’m not that naughty. I … So I went back to the ward, but it taught me something, that, you know, you can get to places and you could rehabilitate and once you got rid of the infection and you get your strength back then perhaps, you know, it wasn’t the end of my life.
John learned how to use his wheelchair with help from physiotherapists and by attending a course...
John learned how to use his wheelchair with help from physiotherapists and by attending a course...
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They [rehabilitation staff] used to take me for wheelchair skills...You go for wheel chair skills up and down ramps to get you used to wheelchair friendly. We used to go round the block in the wheelchair on the hospital grounds. Then they used to get someone in from Back Up to come round to teach you how to get up small kerbs and things, which you’d have to bend right forward and get up the kerb – but it wasn’t too much of a kerb because I couldn’t do it – and go down backwards. So people can go down frontwards. I’m not so clever going down. I can wheel-balance in the wheelchair. But, I can tilt and balance in a chair without falling backwards. Because I’ve been on the wheelchair course and I was taught different techniques. Plus, I went into [rehabilitation hospital] and they taught me different techniques with wheelchairs and occupational therapy.
Some had more than one chair: one for indoors, another for outdoors; or one for upstairs and another for downstairs. People used manual or electric wheelchairs. Wheelchairs were financed through the NHS, local council or primary care trust, wheelchair vouchers, or compensation payouts. Brian’s former workmates clubbed together to buy one for him soon after he was injured.
With any mobility aid, including wheelchairs, people said that experience and a process of trial and error taught them what was best for them. Wheelchairs can be customised to individual need, but Simon felt the best ones were adjustable. It is important to get the right wheelchair for the person and NHS provision was not always good enough.
Since his injury 17 years ago, Simon has had five wheelchairs. He explains how they are funded...
Since his injury 17 years ago, Simon has had five wheelchairs. He explains how they are funded...
Age at interview: 42
Sex: Male
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The basics' my first wheelchair fell apart. You don’t want to spend any decent money on your first wheelchair because it will never be right. My replacement costs for this is £4,000, which is a lot of sort of money every five years. I get a wheelchair voucher, which for my area is £1600 contribution, complete post code lottery because some people get £500, some people get £3,000. I don’t think there’s any kind of clinical reasons to what you get. It seems to be purely budgetary. I will utilise Access To Work for it to bridge the gap between the money that I’m being offered for my voucher, and the money it costs.
I have a British made wheelchair. I probably shouldn’t say who it is, but...I have all the extras, titanium, carbon fibre, custom fit frogs’ legs, stability wheels, and it is a lot of money. But it is the difference between a high quality of life and a compromised quality of life, and again, unfortunately, its money. You know, a £1,000 wheelchair is not as good as a £4000 wheelchair. As is a £1000 car is not as good as a £4000 car. It’s just pure, pure experience of knowing what I want, knowing, I mean I’m six foot five, 36 leg inside measurements. I’m tall in the leg and tall in the torso. The chair has to be fitted for me. It is fitted for me. My chair spec hasn’t changed in over ten years. It’s the same spec as to how it’s configured in all that time. So it works. Yeah, and it’s a good chair. It doesn’t break. It doesn’t go wrong. There’s no, apart from the obvious moving parts on it, there are very minimal moving parts now – it sounds a bit of an oxymoron, but... The bits that move that need to move, move, and everything else is fixed solid and bolted and clamped down so that things don’t wear out or break on it. So, yeah, this chair is old and it’s done well for five years.
Okay and how did you figure out what you needed from it?
Just being in it, just being in it.
Yes.
When you sit in a bad chair you know what’s wrong about it, so you change the next chair to be a bit better and then by the time you get to about your third chair you’ve got it sussed properly.
And is it the sort of thing that you can go back to your supplier and say, “Actually I want this changed or that changed.”?
Not always because it depends on how the chair is built. If it has lots of movable parts then you can configure it off that chair. If the chair is built bespoke then it’s fixed and you can’t change it. So your best chair is to have a chair that is flexible so you can move the camber settings, you can move the seating, posture settings, you can move angles. So, my first chair was like that, but as soon as you have lots of movable things they break, they wear out. So my chair literally fell apart after eighteen months, like a Keystone Cops car that just fall apart, it literally fell apart and I moved on… I’ve now my fourth or fifth chair? Fifth chair in 17 years. So that’s quite a lot. That’s more than one every three years. And given that most voucher schemes are between three and five years, so it depends on what chair you choose and how long it lasts. Some of the frames are meant to last a lifetime but that’s just warrantee rubbish. But this one’s lasted five years, so it’s done okay.
Okay.
It’s been in the sea and snow and sand. And it’s done it’s bit. It’s done it’s time, so…
People with quadriplegia, who can be paralysed from the shoulders or chest down, may need more support for their upper body in a chair. It is possible to get straps to keep people secure in their chair, but people were not sure if this was a good idea in an emergency.
Prosthetic legs
Following limb loss, people usually used prosthetic (artificial) legs to help them get around. Prostheses were usually funded by the NHS. People were mostly happy with their prostheses although sometimes people felt there were budget constraints and differential treatment for some people. Specialised ones (like the blades worn by Olympian, Oscar Pistorius) were not commonly available.
Using their prostheses, people were often able to walk, run and cycle, and do things around the house they had been unable to do since their amputation. Nick considered his prosthetic leg a brilliant alternative to real legs if not a little “cumbersome”. People were happy to be able to walk again and some were proud that other people may not realise they were using a prosthetic leg. However, Nick pointed out that his made a slight noise when he walked and Jack has found he cannot stand for long and “his good leg takes a bit of punishment”.
His prosthesis has allowed Jack to be able to do nearly everything he did before his injury,...
His prosthesis has allowed Jack to be able to do nearly everything he did before his injury,...
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Do you want to tell me about the prosthetic you have?
Yeah so I've got an above the, I've an above knee prosthesis. I have a knee which is a, it's made of titanium and it has a hydraulic cylinder in there to, and the cylinder provides resistance for when you're going down stairs and slopes and things. Then it's attached to a foot which is made of carbon fibre. And on this particular prosthesis I've got an adjustable ankle, so this prosthesis is designed for my flatter shoes whereas the one upstairs, it's the same knee but it's attached to a foot called the echelon which is a self-adjusting ankle, it's like a, it’s a new bit of technology – the first ankle of its kind – and I wear that for when I wear trainers and things. But yeah in terms of technology and where we're at the moment it's phenomenal and I think what I can do with this knee, I'm not that short of what I did before. I think not being a fit and athletic and active person before has helped that feeling that I'm doing more now than I was before, but I still think that this is, I don't think, I think you can do everything that you want to do with one of these and that's a credit to the people that design them and make them I think, yeah they're good.
Prosthetic legs are fitted quite soon after amputation. The part of the leg that is left after amputation is known as the residual limb or stump. Over time the stump shrinks because it is not being used and so several appointments are needed at the limb fitting centre to adjust the prostheses or to have new ones fitted. (For more information on prosthetic limbs, see Limb Loss Information Centre on our ‘
Resources’ page.)
The parts of Ambrose’s stump that haven’t quite healed hurt when he puts weight on them. He uses...
The parts of Ambrose’s stump that haven’t quite healed hurt when he puts weight on them. He uses...
Age at interview: 44
Sex: Male
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Okay and then tell me a bit about your prosthetic leg?
It’s a beautiful thing. Well I was very, very lucky in a way, because my leg, initially after the surgery, healed so well. Normally after this sort of surgery the type of system for the prosthetic leg would be based on a suction system. So you’d have a sheath put onto the stump to protect that, then another cap put on top of there, with so it would be like because they showed it to me, but it was a long time, basically what the idea is, that you’ve got one, the one end of the stump has got, not a sticky but like a, a suction cup on it and then inside the prosthetic leg there’s another suction bit, so when those two stick together, it creates suction and holds the, holds the leg on. And they’re just used normally for initially, because it’s not designed for, you know, long term walking. It’s much more of initial hold it on, get it there and it’s usually just for a little while that you use that system and then change over to the system that I’ve got which is the sort of more permanent as such, where we put a sheet onto the stump which has got a pin sticking out the end of it, which I’m now going to show you hopping Mildred, hopping.
So that bit goes on and that’s sticking out the end, okay and I’ll put it on.
Would you mind if I film this?
No, no, no. So the idea behind this system is that it’s still working on suction as its principle so that this silicone goes on like that, and then you can pull it, because apparently you can bungee jump. I’m not going to have a go. That is completely, if it’s on properly it’s completely solid. And then so I’ve got the screw bit there and then inside of the bottom of there is the hole, okay and so what we do, we’re supposed to put it on properly do it sitting down. Put the sock on, sometimes it will go, sometimes it won’t. Sometimes we need the slippery sock.
And what is this for?
That actually just because this is obviously quite sticky. If I haven’t shrunk my leg down properly I need this to help it slide in.
And to shrink your leg down that’s why you wear that tight sock?
Yeah, which is this one.
Yes.
So the idea of yes, this one is that it shapes it. And sometimes, the sock and sometimes you don’t. …. I need to do it sitting down and you hear the first click so you know it’s in the right place, that’s it done. And that now is completely. It will stay on completely fixed and then just press that button that releases it. Take if off again.
Okay. And how does it feel?
It just feels like your legs because squashed. Because it’s not completely healed yet, it will… I mean the worst it ever is, is at the moment because you can see there’s still just those couple of bits that aren’t quite healed. It’s stingy just like its tender. So you put weight on it and it hurts, but as soon as you take the weight off it stops hurting. So it’s not causing pain it’s just literally you know, if you’ve got a sore bit and you poke it, it hurts. But if you’re not poking it, it’s fine.
A covering called a cosmesis can be worn over the prosthetic limb to make it look more lifelike. It allows people to conceal their prosthetic. Whilst people understood why this may be important to others, they usually chose not to wear one because they did not look particularly realistic or they did not fit well under trousers, especially for above-knee amputees.
Jack likes to show off his prosthetic leg, but understands why some people would choose to wear a...
Jack likes to show off his prosthetic leg, but understands why some people would choose to wear a...
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You can have a full leg cosmesis that remains on your leg at all times. It starts here and it ends at the bottom and it's, it covers everything and it just makes your leg look like a leg. I don't think it looks like a leg. I think if I was in a pair of shorts you could tell from a mile away that's not a real leg because it's a bit of foam that's manufactured to look like a leg. My personal feeling of the full cosmesis is horrendous and it just…you're trying to make something that's never ever going to look like a real leg look like a real leg so why bother? That's my personal opinion of it. However I've spoken to a lady in particular which I remember and she, that was, well she's an older lady, she's like in mid-forties I think and [physio’s name] asked me to speak to her just to – she had just come in and the whole massive thing of losing her leg had just finally hit her and I was just there to speak to her to you know give her a bit of a, cheer her up and tell her it's going to be alright, that whole false thing. I didn't use any of those words though. And her, one of her biggest concerns was being able to wear a dress and look normal and I said, "Yeah you can." I didn't tell her my opinion of it because that would have put her off and that would have made her feel even worse but I'd; and I said to her, "Yeah you can get a full, full leg cosmesis and they look the part as it were. But for me personally I think they look horrible, I think. They're trying to make, they're trying to make your leg look real when it's never going to look real and for me also I think that [prosthetic leg] is a work of art in terms of metal work and technology and I think it's brilliant and I want everyone to see it . I think it would be a crime to not let everyone see that because I think they're brilliant, absolutely brilliant. The technical and the amount the technology in there is just phenomenal so.
Nick decided to wear a cosmesis because he did not like people staring at his leg, though he said...
Nick decided to wear a cosmesis because he did not like people staring at his leg, though he said...
Age at interview: 68
Sex: Male
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May I show you this? Do you want to see it?
Yes.
Can you face it?
I can.
Are you sure?
Absolutely. So long as you don’t mind.
No. I don’t mind. I minded tremendously to start with. I didn’t want people to see I’d got a tin leg, you know, which is why I’ve got this. This is called a cosmesis. There was a metal pin, you know, you may have seen guys, particularly army guys, they have just have a steel leg.
Yes.
Well I’ve got this cosmesis, this sort of foam as a pretend leg. Because I found, when I was sitting on the tube particularly when I first had my leg, there’d be this bit of steel poking out, and I found everyone sort of staring at, you know, my leg, and I didn’t want them to do this. So I got this sort of, it doesn’t look quite so artificial now.
The foot on a prosthetic leg is smaller than the other foot. It is quite flexible and gave people a realistic “heel to toe sensation” (Jack). People could buy most kind of shoe to wear with their prosthetic, other than boots or heavy footwear.
People had regular contact with the limb fitting centres and met with prosthetists, the staff who make and fit limbs. The centre was a good place to get information from other patients as well as from staff. Knowing what problems were urgent and what could wait was something people learned from experience.
It is important to keep the stump and limb socket clean because prosthetic limbs can cause skin problems (e.g. skin breakdown, blisters, bruising). A poorly fitted prosthesis can cause pain when the stump touches the socket. Such problems can often be dealt with, and can be related to weight gain or the weather. People used cream, allowed the stump to get fresh air and used the prosthesis for limited time to manage this. Some people were unable to find a satisfactory solution and opted not to use one.
Bill could not get a prosthetic leg to fit comfortably and eventually gave up trying. He now uses...
Bill could not get a prosthetic leg to fit comfortably and eventually gave up trying. He now uses...
Age at interview: 57
Sex: Male
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So tell me a little bit about those problems that the prosthetic leg caused?
Bill': Well on, I went to the rehabilitation clinic on one occasion and one of the things that happens after an operation is you might have a huge stump. You put a prosthetic leg on and that then reduces the size of it. And as you get better and as the damage the surgeons have done lessens, then your stump will get smaller and you will also find that there will be muscle wastage in the muscles that you’re not going to be using anymore, which again was why you need to make sure that the muscles are connected properly in the operation on the amputation.
But once you’ve got your legs they will change. Your body weight changes. So I’ve had one leg and the prosthetist said to me, “Oh don’t wear it. Take it, take it on a wheelchair home and put it on when you’re at home.” I said, “No, I shouldn’t do that.” Go out to the car, do what I have to do, you know, with the sticks. Did that. Drove home. This is the old house. Needed the toilet when I got it. The toilet is upstairs, so I need to go up the stairs. I’ve got banisters either side to help me up. And got to the third step, leg fell off. Literally. It was a suction leg, so basically you needed to be sure that your stump was at the right size and the suction held. If the suction gave it came off. So that was on the Friday.
I went back on the Monday, told them the problem. They put a liner in. So what they do, they take the liner, they take the socket and they put leather inside it, that then reduces the size of the socket. But they can only do that two a prosthetic two, three times before they then have to do a new socket. And
I went home. Again the following day leg dropped off again. I went back second liner. Second inside. By the end of that week they had to scrap the leg, the socket, and start again because it had all reduced. Because by the time I had another socket, which takes weeks by the way, the stump’s not so big, so you’re like this all the time. So you’re always up and down and up and down. That was one leg.
But there’s always a problem. There’s never anything right always, there’s always a problem, always a problem with prosthetics. My particular problems surrounded the way that the socket pressed against my flesh. And they don’t tell you. And the question, how do these athletics do it? Well how they do it, they go through the pain barrier and their stumps are red raw, because you can’t do that level of exercise without affecting your skin in some way. And when you then have the problems of cysts and sores and sweat…
Catherine: Skin breaking down.
Bill: Sorry.
Catherine: Skin breaking down.
Bill: The skin breaking down it becomes very, very painful. And…
Catherine: It never went away for you did it?
Bill: It never went away from me, that’s why I give up eventually.
Long canes and guide dogs
People whose injuries resulted in visual impairment used long canes to aid their mobility. Rob described his as “a trusted companion”. Long canes were important for alerting others to the impairment and for helping to get around. As well as helping people find mobility aids, rehabilitation staff helped people with visual impairment plan their daily travel routes.
Rob uses his long cane to tap markers that make different noises and alert him to where he is...
Rob uses his long cane to tap markers that make different noises and alert him to where he is...
Age at interview: 24
Sex: Male
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I have a, I have a long cane. I’m applying for a guide dog, they’ve been really helpful as well. Like, Guide Dogs have really helped me with my mobility recently. Like they’ve really helped me nail the route to and from my college. So I’ve been doing that independently. I can do that independently whenever I want now. So I can turn up to college on my own, I don’t have to be on someone’s arm all the time, and it just, it makes you go from feeling completely disabled and just needing someone around you all the time, to, you know, having independence, being, being free.
Okay and so how did, how did you go about learning the route to college for example?
When St Dunstan’s came down, I have a ROVI, which is a rehabilitation officer for the visually impaired, and he went through the route first and assessed everything. Mobility is what he’s trained in; he’s trained in teaching people mobility, so he knows all the best tips and tricks for helping me find my route. He planned out a route for me and I basically follow that route, and Guide Dogs have reaffirmed that and helped me get it nailed down now, and I know exactly. So, I’ll go along with my white cane and I’ll look out for markers, so certain lamp posts in certain places I will make a different noise when I tap my cane against them and people can hear me coming from a mile off, because I’m just tapping, tapping different big metal objects as I’m going down the street and you know, waking up all the neighbours at six in the morning or, or twelve at night when I’m coming back from the pub.
Tapping away.
Yeah, tapping away and stomping down the street.
Okay. Right I didn’t realise that that would have been, you know, how it was done.
Yeah.
That you would sort of be picking up on noises on markers and so on.
Yeah. There’s, crosses and that have the tactile blister paving. I mean you must have seen the tactile blister paving that’s almost at all the crossings and that you can feel under your feet or with a cane. But, certain things like, there’s a crossing at end of my street, and what I do is I walk up till I feel the bend of the kerb, follow the bend of the kerb round with my cane and as I’m walking like the first lamp post I hit that’s the safest place for me to cross in the street and basically my ROVI, he’s basically sussed out that route. He’s like this is going to be the safest place for you to cross. You hit this marker, obviously wait ‘til it’s clear and then cross the street. And different, tonnes of like the minutia of it, like there’s tonnes of different tips and tricks to make sure you’re level, like with the kerb and so you’re definitely going to hit the kerb on the other side, you’re not going to be, you’re not going veer off and be walking in the middle of the road for ten minutes.
Guide dogs also support visually impaired people to get around. Rob did not want a Guide dog at first because of the responsibility involved in looking after a dog. He has learned how Guide dogs improve the speed at which people get around because they perceive obstacles in the way and make it obvious to other people that the owner is visually impaired.
Rob thinks that having a guide dog will be “tough but totally worth it”.
Rob thinks that having a guide dog will be “tough but totally worth it”.
Age at interview: 24
Sex: Male
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What difference do you think the guide dog’s going to make to your life?
Massive. I mean aside from anything else I absolutely love dogs. I mean I’m glad that’s, that’s the animal they chose to guide people rather than anything else. I’m a massive, massive dog fan, but that’s not obviously the reason I’m getting a guide dog. I put off having a guide dog for a long, long time. I didn’t start applying till four or five months ago. And I was, I was hesitant because I wanted independence on my own, like I wanted to use the long cane and I wanted to be able to go out and it’s a massive responsibility having a dog. It’s another, it’s another life you’ve got to take care of and it’s got its own personality. It needs entertaining and caring and looking after and I wasn’t sure whether I was ready for that responsibility and, until, until five months ago and then I decided you know, I’m ready and this is something I want to be a part of my life.
And have you concerns about getting a guide dog?
I don’t know. I wouldn’t... It’s that thing of, it’s a massive responsibility. It’s huge. It’s another life, like I’ve got to care for, and it’s hard work and times will be hard. I know there are times, because you have to take that dog out, every day and you’ve got to work that dog. And there’s going to be times when it’s snowing and cold and I’ve got no other reason to go out and I’ve got to take that dog out. And I have to do it, but the reward of actually having a guide dog is, is just so worth it that it doesn’t really matter about things like that. I can do that and be happy, because I think it’s actually the privilege of having a guide dog would be fantastic.
And do you relate to the guide... because you have a dog already…
Yeah, yeah.
A family pet and do you think you have to sort of learn to relate to the guide dog in a different way?
Yeah, he’s a working dog, first and foremost. I mean, he’s, and my discipline with him is essentially. I can’t, I’ve got to trust my safety to that dog. That dog’s got to walk me across streets. It’s got to walk me out the way of obstacles. It’s, it’s got to be my eyes when I’m out there and I’ve got to put my trust in him and he’s got to put my trust in me, he’s got to, got to put his trust in me and it’s yeah, it’s a big bond and I know it will be hard, I mean dogs, they, even though I can’t see him, I can tell when my dog’s looking up at me, and he wants to be a bit naughty. He wants to jump up on the sofa or he wants, he wants a biscuit and stuff and it’s tough to say no to him sometimes. But with a guide dog, I mean, he’s allowed like, they’re allowed freedom and happiness and like everything like that when they’re, when they’re off the harness. But there’s still got to be that sort of relationship where when that harness is on, he’s working and I’m working the dog, and yeah, it’s time to go to work. So it’s going to be tough, but definitely worth it.
Other aids
People sometimes used sticks, particularly if they had balance problems. Some were advised to do so by their doctor as a way of alerting other people to their problems. Nick, who used a prosthesis, always uses a stick on the Tube to alert busy commuters that he may not be able to get out of the way quickly. For some this was a good solution, but others didn’t want to make their impairments obvious.
Find out about other challenges and strategies people used to adapt to life after injury and aquired disability.
Last reviewed October 2015.
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