John Andrew is determined to overcome the physical effects of his spinal cord injury, which happened four years ago. He puts it this way: “Nobody will ever tell me that I will not walk again because I don’t believe them. I might need the one cane, but I will walk. I guarantee you I will walk.” John Andrew applies this determination to his exercise regime, which occupies a good part of his day. “I treat my therapy like [a] job. I try and spend about eight hours a day working on different forms of therapy…. I can’t work, but there’s no reason why I can’t work really hard and try to get better.”
Not surprisingly, much of John Andrew’s equipment has been purchased to support his mobility goals. He has set up a gym in the basement, complete with parallel bars and practice stairs. In addition to his manual wheelchair, John Andrew has owned two types of walkers as well as canes for getting around in his community. He practises walking for a couple of hours a day in his heated backyard swimming pool whenever the weather allows. He also uses a hot tub to relieve pain.
Because John Andrew was injured on the job, his main source of income and funding is workers’ compensation benefits. He has a good relationship with the people there. “I can’t say enough good things about them, but they want to make sure you’re using [your equipment] too. And when my nurse/case manager comes to see me, she just can’t believe how I use everything.” John Andrew does put his equipment to good use, partly because he considered his needs very carefully before purchase. He would prefer not to buy anything unnecessary, even going so far as to hold off on purchases in case he progresses physically in the future. “You always think of a few things [to buy], but I always put them off because I want to see if I can progress to that next step without it.”
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See John Andrew’s accessible home, including kitchen, bathroom and two elevators.
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While John Andrew was in rehab, he came home every weekend. His nephew is a carpenter and he made a couple of small changes to the house to make it minimally accessible, including a temporary ramp. As a result of these weekend visits, John Andrew and his wife had experience living in the house when it came time to plan the accessibility renovations. They also had an occupational therapist to help them translate their day-to-day living needs into a set of requirements for the builder. “Like for instance, I said to them … my wife is going to be working so if I want to do dishes, I want a space under the sink where I can get underneath with my chair…. I want to have a counter space where I can make a sandwich on my own for lunch or whatever.”
The renovations themselves took about six months to complete, and during that time, John Andrew stayed in a nearby empty house. His own house was a bungalow to begin with, but because of a finished basement there was need for an elevator. John Andrew spends a good portion of his day in the basement: “I have my exercise room, my computer, a TV and a stereo system down there.” The elevator is hydraulic instead of electric, which is important because it can go down with gravity alone. This means that John Andrew will not be stuck in the elevator if the power goes out—he can always get to the basement. Upstairs, they built an addition onto the back of the house for extra space and made the usual changes for accessibility, such as a wheel-in shower and a wheelchair lift off the back deck. Because his wife works during the day, John Andrew does most of the household chores and cooking. As a result, the kitchen is built with John Andrew’s needs in mind. For example, the knobs on the stove are on the front. The washing machine also loads from the front. John Andrew finds that he can move around the house and do what he needs to do during the day. For safety, he always carries a portable phone with him in a pouch on his wheelchair.
The backyard was also included in the renovations. They had a swimming pool before, but it wasn’t heated. John Andrew has had problems with painful spasms, especially in his back, and he finds that warm water is an important source of relief. “The pain was really bad at times, and at [the rehab centre] they had a big pool that was heated and oh man, that felt so good.” John Andrew controls the pool’s temperature carefully. “When I first came home … I couldn’t get in it unless it was 91º. As soon as the feet hit the water they’d just dance and spasm like crazy. And at 91º I’d get in and they wouldn’t spasm. And now I’m down to 86º.” The pool has steps in the shallow end instead of a ladder for accessibility. In the winter, John Andrew uses a hot tub for pain relief. The chairs on the deck were also selected carefully. “I can get in and out of those by myself and that’s what I wanted—something that allows me to do things without an assist all the time. Because I don’t want my wife trying to lift me around and hurting her back and both of us being laid up. So the more I do by myself the better.”
This desire for independent mobility also figured into John Andrew’s wheelchair selection. He chose a chair with solid armrests so that he would be able to reach for things while maintaining his balance. He said, “Like when I get home, I don’t want my wife waiting on me. I want her to be able to go back to work. I want to be able to get something to eat, and I want something with [armrests] so that if I bend over, at least that’s going to stop me from going right over on the floor.” He also liked the way his chair supported his back. He chose solid tires instead of air-filled because he found them easier to push on hard surfaces. John Andrew notes that the tires aren’t as good on less solid ground, “on dirt or something like that.” He uses his chair most of the time while he is at home.
John Andrew has found exercise an important coping mechanism for dealing with his injury. He says, “I work myself so hard that I don’t have any trouble sleeping. You never have to worry about me sleeping…. And I don’t get depressed very much. I mean I did go through a stage where I was depressed a lot but I got past that. And when I feel that coming on I say, ‘Oh, come on now; don’t go around feeling sorry for yourself. That’s not going to do you any good. It only upsets you and gets your stomach upset and it gets your back upset and the first thing you know you’re spasming.’ There’s a lot that has to do with your nerves, just letting things work on your nerves. You just have to forget that. ‘Ok, why am I sitting here feeling sorry for myself? Let’s get in the pool or you know, just do something’…. So I turn on the music and get into the pool and I’m doing exercises out there like you wouldn’t believe.”
John Andrew doesn’t just exercise for the mental benefits though. He sets concrete goals for himself and exercises to achieve them. One of the first such goals involved working on a leg cycle to improve his circulation. He says that, “To get the motion going with the legs I had a, it’s almost like a bicycle that you could ride sitting in the wheelchair. I used that about three months after I got home just … because [the doctor] said the more I used the legs, the less chance I’d have blood clots. And when I came home they had these white socks that are really tight and come all the way up. They were terrible.” John Andrew asked the doctor if there was any way to avoid wearing the socks. “And she said, ‘Well, if you work hard enough, you wouldn’t have to wear them.’ So that alone was a big incentive, let me tell you.”
Around the same time, John Andrew started with weights to build up his arm strength. “My wife and I went and bought a ten-pound weight, in order for me to do my arm exercises because I knew I was going to need good arm strength to do the walker. So I really tried to build up the strength in my arms … because I would never walk with a walker if I didn’t have my arms to start me going.” That work paid off and today John Andrew often uses a walker when he goes out. “Let’s say my wife and I decide to go somewhere and have take-out and go down by the water and eat. I don’t use a wheelchair. I go out with my walker, I sit in the van, and then we go and when I come back I get back in the walker and walk back in the house.” John Andrew uses another example to demonstrate the benefits: “There’s one restaurant that we go to … and I walk in with a walker, sit in the chair, have supper, and walk back out to the car. It gives you more freedom and you know, I feel better about myself being able to do things like that.” He also brings the walker when he visits friends and family. “About six months ago, for the first time, I went and visited my friend at his home and I was able to get in with a walker. He helped me up the two steps and then I got into his place with the walker, went in, sat in the Lazy Boy and visited for two hours. And then he helped me get back out and I came home. And that alone was big because I didn’t even take the wheelchair.”
John Andrew has reached the point with his walking that he can do without his wheelchair on many trips outside his home. “The only time I use the chair is if I’m going to go somewhere and … be in there quite a while.” John Andrew doesn’t believe that his preference for walking has anything to do with self-consciousness. “I feel quite comfortable with the wheelchair…. At first, you hated to go anywhere because you didn’t want people to see you in a wheelchair. You have that in the back of your mind, I don’t know why, but you do. But it doesn’t bother me at all now.” However, using the walker does have a positive impact on John Andrew’s self-esteem. “It gives me a lot of confidence in myself, … and it’s just nice to know that you don’t have to sit all the time, that you can get up and move around.”
The wheelchair is still an important piece of equipment for John Andrew around the house. He prefers not to use the walker outside when his wife isn’t around in case the stair lift breaks down. “I wouldn’t be able to get back in and I wouldn’t be able to stand very long because the legs get tired fast.” Similarly, he avoids bringing the walker in the elevator—if he got stuck, he’d have no place to sit down.
John Andrew has not stopped setting mobility goals for himself. These goals might be functional; for example, he’d like to go to a restaurant next summer with two canes instead of the walker. Some goals are purely exercise goals though. For example, John Andrew gets in the pool for two or three hours every day that he is able, to work on his balance. He recently achieved a goal that he had been working on for two years: “My friend comes up and helps me every day…. He stands beside me and I try and walk across that pool without touching anything, just using my hands for balance. And I did it last Tuesday for the first time…. And I hope by the end of the summer I can go over and back and over and back.” Like other exercise, John Andrew finds his work in the pool an important source of motivation: “Just when I start to get a little discouraged sometimes, something seems to kick in. Like I got so discouraged trying to get across that pool and falling and falling and falling, and then a week ago to finally accomplish that goal was a lot to me…. But it took me almost two years in the pool in order to do that. So you’ve got to have patience and work hard.”
This habit of challenging himself to do more includes his workouts on parallel bars in his basement. “At first I used to have both hands on them; you’re walking almost with your arms. And then I got so I could … gradually be able to walk like that and I said, ‘Well if I can get good enough at that, I might be able to walk with two canes.’ So I practised and I practised and I practised. You have no idea how many hours I spent down there. So finally one day I got so, ‘Hmm, I can do this very good now.’ And then I tried … going with one hand on the parallel bars and see if I can go all the way, the length, only ten feet mind you, but see if I can do it … with one hand lifting as if you were walking with one cane … I mean actually trying to walk the way you would with one cane. And I finally accomplished that about three months ago.”
In a similar vein, John Andrew has been working on a homemade set of practice stairs that he set up in his basement. “When I first started to do steps, I had my brother-in-law build steps that were only two inches high with solid rails. I would practise going up one side and down the other. He’d made two steps up, a platform and two steps down. I’d practise that. I got really good at it, so he came back and he made the steps three inches high.” Eventually, John Andrew progressed to the point that he could just use the real stairs in his basement, and he has asked his brother-in-law to remove the practice set.
John Andrew has found that time and exercise have improved the back spasms that used to cause him great pain. “Up until a year ago, my back was absolutely terrible, the spasms and the pain, but I never let it stop me. I would keep working and I find if you can work through it, it does get better. Because I haven’t had back spasms now for six weeks, and when I do have them they’re nowhere near like they used to be…. If I can lie down and curl my legs up and just stay perfectly still for ten minutes, I can get over them.”
John Andrew thinks very carefully about the assistive technology he uses. He prefers not to use a device to accomplish tasks if he can avoid it. For example, he was introduced to a reacher in rehab that he could use to help with getting dressed. “I said no. If I have something like that I might have the tendency to use it, while it might be better if I work harder … so that was my goal, to not use it if I didn’t really, really have to.” John Andrew found that he could get dressed without the reacher after “two to three weeks” of practice.
John Andrew had a similar experience with a transfer board that he had been using to get in and out of his car. One day, coming back from therapy, they left the board on the roof of the car and it was lost when they drove away. Instead of getting another board right away, John Andrew decided to try to learn to transfer without it. “I am very determined. So I say to myself, ‘If I’ve got it I’m just going to use it. But if I don’t have it, it just forces me to find another way to do things.’ So when I lost the board it was a godsend really.”
John Andrew would like to get rid of the hand controls on his car once his left leg has progressed a little bit further. He has never been comfortable with hand controls, and he has discovered a simple adaptation that he could buy to put a second gas pedal on the left side of the brake so he could use his left foot for both pedals. He learned about this adaptation through a popular magazine about disability issues. He finds he reads this magazine often, looking for new ways to do things. He finds that the Internet is another excellent source of information on new equipment.
Although John Andrew seems to be looking for ways to do without assistive technology, at the same time he recognizes that technology is important to achieving his goals, if even just temporarily. He says, “You’d never get to the next step if you didn’t have that technology to start with.” In this way, John Andrew seems to consider some of his equipment almost like stepping stones to increased mobility. He points to the two different walkers he’s had as an example of this stepping stone idea. His first walker had no wheels, just posts. To move forward he’d have to pick up the walker and move it. He remembers trying a wheeled walker at his rehab centre and having no control over it. After two years of using the walker with the posts, he felt he had progressed enough to try the wheeled version again. He tried one at the local equipment vendor’s shop and convinced his funding agency to purchase it. That’s the walker he uses today. He doesn’t think he would have gotten to the point of being able to control the wheeled walker if he hadn’t worked with the non-wheeled walker first.
John Andrew advises a try-before-you-buy approach to people with recent spinal cord injuries. “I would just recommend to really think things through and see what works best for you.” He points to his leg cycle as an example of a time from his past when he could have wasted a lot of money if he had bought too soon: “When I was trying the bicycles from the wheelchair, … there were two models that I couldn’t even work. So if I had went out and got one I maybe would have got one that I wouldn’t have been able to use. And being at [the rehab centre], at least I got to try them all and I found one that really seemed to work for me.”
Finally, John Andrew is clear about the importance of family. “Without the love and support of my wife and daughter, I wouldn’t have been able to continue on my road to recovery,” he says.
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