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.

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 onI’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, sonbsp;

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 willI 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.

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.

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.

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.