Bill:Anyway but I moved to the rehabilitation unit and there was some serious mind games going on there, very serious mind games. Beneficial mind games, but I think they were beneficial.

My very first day at walking school, which was like a gymnasium where you go in and you learn how to walk again. They just wheeled me in and let me see things. They didn’t do anything the first day. A day in walking school lasts about two hours, doesn’t it? It’s not quite a day. But there’s other health issues that people have got so the day turns out to be two hour day in the gym. And the first day they wheeled me in. I was feeling pretty sorry for myself. I was buoyant at the same time. I wanted to get on with it. I wanted to get my life back.

Catherine:You were really enthusiastic at that stage.

Bill:Yeah, I was, but I was also beginning to feel the disability. So the first mind game that they played on me was they sat me in a in with other amputees and the guy next to me wasn’t even English. I don’t know what nationality he was, but he couldn’t speak English and he’d flung himself in front of the train and he’d lost both his legs above the knee, very high above the knee. He’d lost an arm and he’d lost part of his I’m not sure which hand it was, right or left hand but he’d lost part of his hands, his fingers. And all he had left was a leg like this. I’m sure it was deliberate, because even though I was feeling buoyant, it was like trepidation to move forward. What am I going to do now? You know, but it had the beneficial effect of actually saying, well I’ve only lost, I’ve only lost my leg. This guy’s lost two legs. And an arm. And you think, how is he going to cope? And it’s like you know, thankful for small mercies, you know, I’ve only lost a leg. Bad enough isn’t it?

So the next day a speech therapist rang, and I said to her, you know, He’s only 21. He’s had a traumatic brain injury. He’s still not communicating and needs, has problems walking And she said, Well, you know, you can’t jump the system But I said, Well you know, he can’t swallow properly and breathing can be difficult And she said, Okay, well have him come in for an assessment next Monday So I thought great, you know, at least that’s a start in the right direction.
He had an assessment of like between one a half hours to two hours. They asked us a few questions, but it was really Daniel they were focussing on, which was brilliant.

And at the end of the meeting they said, Yes, he was urgently requiring rehab And they had an appointment booked within two days for him to start speech therapy. And we were so delighted. But I did feel that he was, when Daniel was discharged from [rehabilitation hospital], he was well enough to come home, but then there was a lack of the next step, and again you know, I feel passionate that without us ringing ourselves the [hospital] team, Daniel would not have made any progress whatsoever because, although we were sent home with exercises for him to do, he wouldn’t do them for us. I’m tired. I don’t want to do them And because of the emotion within the family, of course, we’re not going to pressurize him. Or, you know, say, If you don’t do the exercises then you won’t get betterBut when you have your third party and they knew when he didn’t do the exercises because they could tell by his progress.

I emailed people because they told me that there was nothing that could be done. So I actually started emailing neuro-scientists, anyone that had something where it; it seemed they actually knew what they were doing and I found out what they were saying that worked and then what I did was I found programmes that seemed to be able to carry some of that out and I matched them to the areas of my brain that were injured because I figured that it would; it’s almost like going to a gym in that if you’ve injured a shoulder then you might not necessarily be able to directly exercise that shoulder but you can exercise all the muscles and the ligaments and everything around that shoulder and strengthen it and protect it and then eventually get to the shoulder and make the difference. So I took all the areas like attention, processing speed, memory, executive function and I found out where I could work and kind of tailor made a plan for me and I do that a lot for people now. I do a lot of consulting in that field. And what people don’t realise many times is they think that they can buy a computer programme off the shelf and if they’re doing crossword puzzles or if they’re doing something that says its brain training that it’s going to make a difference and many times it’s not. It really needs to be targeted to that person’s specific deficits and those deficits need to be built for it to make like a long lasting difference because otherwise what we find is people get good at the games but they don’t get any better at life which, you know isn’t so helpful. Maybe they get a little bit of self-esteem but if, if those strategies are used correctly they can make, they can make massive gains.

Yes, I think I was probably in bed for eight weeks before I sat in a wheelchair for the first time. Getting up for the first time, you’re warned that it will be very difficult and you’ll feel nauseous and you might well pass out. You are prepared for going into a wheelchair by taking some ephedrine, which raises your blood pressure, keep your blood pressure up, because having been horizontal, to go vertical your blood pressure drops enormously. And I certainly remember taking that. I also had a binder round my stomach and abdomen to also try and keep my blood pressure up. And I think getting up for the first time I was able to do 15, 20 minutes, something like that, before you have to go back to bed and, and lie down. And you feel exhausted after that. And then obviously, you know, it was extended over the course of time and, you know, after a few weeks you’re up to a couple of hours. And then at, at a certain point you sort of reach the, the situation where you can be up all day. And then, you know, in conjunction with that was various physiotherapy sessions that you attend, occupational therapy

And then what about the speech and language therapy? Talk me through what happened with it?

Well, as I said like, I couldn’t, I was just trying to speak, but it was all like air. There was no like, as I am now, I can speak it now. But when I couldn’t, it was just all like air. I couldn’t like grasp at anything. I couldn’t, like even letters. I couldn’t like p’s and s’s and stuff like that, I couldn’t say it. No one could, well apart from like, they could do like exercises like, like blowing my cheeks and stuff like that, and my lips and stuff, that was the main like worries for me, and for them.

What was that, the physical

Yeah, like muscles, the muscles on my, my lips, my lips and cheeks and stuff. Everything, pretty much. Everything. But they kept doing it and doing it, and obviously I was getting like a little bit better and stuff like that, but they were obviously, they just didn’t stop. So I can’t explain it, but yeah, it just happened as it did. It was just, I was so glad. Obviously, like I couldn’t say what I was thinking because I was just thinking about getting back to speaking and stuff like that. I didn’t want anything else, but I could talk again and that obviously just again spurred me in as well as the – what’s it called – As well as the walking and talking again. That’s all I was aiming for.

And so the speech and language therapists helped you sort of regain the muscles control in your face?

Exactly, exactly, yeah.

And then did they work on your actual speech itself?

Yeah, yeah.

And tell me about how they did that?

Like again, like that, it was all to do with the muscles. That was all it was. Like obviously there was other stages I needed, like think about, like obviously like the facial like expressions and stuff like that. I had to, it was like the same as walking, I had to just train it all back again. Like, my, especially my lips and my mouth that was the hardest bit, than the walking again. It was more I can’t explain it, but it was so, I was trying so much, but it never clicked, if that makes sense, whereas the talking and the walking did. I just, that spurred me on so much, and then when I couldn’t talk and stuff like that I just, well I’m not going to be able to talk again well, as much as I did, but yeah. It all, it all came through, thanks to the obviously the speech therapist and stuff like that.

Yeah. So I did probably fairly typical neuropsych testing. So I think, I had to draw some kind of diagram which I dismally failed at. To do some word association stuff and I think, there were sequences in numbers as well I had to do. So, I think I couldn’t do very many. I probably maybe five or six numbers which is definitely a lot lower. So I’ve got a psychology degree, so I’d done that sort of stuff in first year psych and I know that [laughs] I know that I was like above average back then so, so, yeah, I think, yeah, it was pretty tiring. That’s about all I remember as well.

And I mean the psychologist had tried to establish, I mean it’s always difficult, I guess because no one gets that testing done and has a baseline, you know, at 18 or whatever, so we don’t really know what we were before, but he tried to establish how smart I was I guess, and you know, I had a degree, what grades did I get at university, you know, what did I do for a job, that kind of thing. I guess to establish may be where my intelligence was prior to the accident. So it was, yeah it was quite, for someone I think who’d always had good memory, I’d always had a good memory, I’d always been pretty sharp and you know, I wouldn’t say I was always a very, very high achiever, but you know, I’d done very well in some subjects and school and you know, it was quite hard actually, like I was quite scared afterwards to do any kind of quizzes or board games or anything like that. I was actually quite scared because I knew that I’d like to win, and I wouldn’t be winning [laughs]. So, you know, so, yeah, and I think the first time I did do, I was playing some sort of game on a Playstation or something with my neighbour and I knew I was impaired, I knew I wasn’t as good as what I would have been, but I think I still beat him [laughs].

Yes, it’s tough rehab, really tough. And it doesn’t stop when you leave hospital, it starts, so you’d better pay attention while you’re there.

I suppose you know, you sort of, you don’t get a chance to practise it in hospital?

No.

Well at least not in your real life situation?

No, not at all and also the therapists are able-bodied. They know the theory, they know the clinical side of it, but they’re not actually doing it themselves and that’s where the expert patients do come in, because they are the ones that say, I had to learn. I had to struggle. I fell on the floor. I got it wrong. But eventually I got there, and these are all the pitfalls, these are all the problems and these are all the tricks and short cuts to speed that process up. So rather than doing like I did, you know, taking years to get independent, if you can shorten that process down, then you can move on with your life and get back to doing all the things you want to do, which is, you know, work and going out and whatever it is that yourdquo; You know, for me it’s travelling, and cooking and going to the pub. You know, going to gigs. For other people it might be something really different. But getting back to the important stuff and not being bogged down in never-ending rehab.

And the whole rehabilitation process is gearing you up to leave hospital and resume as normal and healthy life as, as you can outside hospital. And I would say that your rehabilitation continues really way beyond hospital, because hospital is quite an unrealistic environment. it’s, it’s a flat area with nurses and, you know, hospital equipment everywhere. And out into the real world is quite different. So I think, yes, your rehabilitation starts in hospital, but it, but it also carries on when you go home.

And also it gave me self-confidence which I’d lost completely. And it gave me a sense of, contributing towards my recovery and I was actually actively doing something to, or I could see, I could see each day that I was making progress. I was getting fitter. And it was helping me relax as well afterwards I would say.