Alex lives independently in his own home in a rural setting. He enjoys an active lifestyle and he expects durability from his power wheelchair, which he frequently takes off-road. Image is important to Alex and he prefers not to rely on advanced or complex technology that is more identifiable with disability. His home has no modifications except for some doors, which he is now having widened. His van is an exception, which he views as being very cool with its “sci-fi” technology.
Alex stresses the need to communicate effectively when looking for useful assistive devices. He describes himself as “a people person, a talker” and he is not afraid to ask others how they accomplish tasks independently. He also builds productive working relationships with rehabilitation service providers and uses his communication skills to negotiate with them for the devices that make the most sense to him.
Go directly to:
Alex started with a power chair in rehab once he was able to sit up, which was about two months after his injury. He learned to drive it through trial and error using visual feedback because he regained motor movement before sensation. “I couldn’t just touch something and know I was touching it. I had to look and try and judge.”
This early power chair had tilt and recline that became unnecessary once Alex could relieve pressure by shifting his weight. Once he gained arm strength, he didn’t want the power chair at all. For a while, he spent his mornings in a manual chair, pushing himself down to therapy, working out and then going back to his room to be transferred to his power chair for the afternoon.
Unfortunately, pushing a manual chair caused him too much pain because his rotator cuff had been damaged in his accident and the strain was beginning to tear his shoulder muscles. Alex was disappointed at first. The image associated with the wheelchair mattered a lot to him and he wanted to function more like someone with a lower-level injury. “A manual chair is easier to get around, it’s lighter, it looks better, and people don’t look at you quite as funny when you’re in a manual chair…. I felt that I was doing more for myself in a manual chair.”
Alex did come to the realization that he “could do more for longer” in his power chair instead of pushing it. Later on, he surprised himself that he could get around faster than most people. Alex tried out a number of chairs while in rehab before settling on the one he currently uses. It usually took him about a week before he felt comfortable in a new chair, but if he didn’t like it, Alex would persist with his therapist to try out another one. Alex’s present chair is “the only chair that I ever liked right off the bat.”
Alex leads an active life and expects a lot from his wheelchair. “I figure that the chair’s my legs and it’s going to get me where I used to go, so I go out in the woods and everywhere else…. I’ve been on rocks, up steep slopes … I’ve tipped over sideways because I’ve been on slopes too far sideways and hit a rock.” His chair does the job, but it does not quite live up to his expectations for what a chair should do in terms of going off-road, over snow and ice, and not tipping on rough ground. “The wheelchair doesn’t do as much as I would like it to. But then again, I would want a chair that would be able to climb stairs and go up over curbs and over fallen logs … basically I would need a hovercraft.”
However, when he goes for a replacement, Alex intends to get the “exact same model” rather than pursue a different style. “I’ve heard way too many horror stories about getting new chairs, so I just want to stick with what I have that I know works.” He knows how his chair handles as well as its limitations, especially off-road. For him it’s “tried and true.”
In rehab, Alex began to build productive relationships with service providers to help him get the equipment he needs. He has come to value these relationships for the help he gets solving problems. He talks about working closely with his occupational, physical and pool therapists to find solutions. First, it was regarding his wheelchair. Later, when he experienced back pain following extensive therapy, he was able to discuss his problem and they suggested a lumbar support. When that worked, his therapists ordered him a solid back rather than the regular soft seat back. Alex also negotiated a standing frame for his house by agreeing to regular therapy to prove that he was able to stand in a frame for 20 minutes and could also pull himself up and stand in it on his own.
Alex has a minivan with a lowered floor, ramp and adapted hand controls. He originally purchased it without the adapted controls and ramp. His ex-wife would transfer him into the passenger seat, put his manual chair in the back, and she would drive.
He learned about adapted controls while attending therapy by talking and watching other people at the VA spinal cord unit that he attended, although none had the same high-level injury. He went into other people’s vans to check them out. While the VA had an adapted van, its available controls were not exactly what he needed and “so we kind of figured out what I needed and then just ordered it. They installed it on my van and then I used my van to train in.”
At first, Alex was both excited and scared to learn how to drive with the adapted controls. For his first lesson, Alex and his instructor drove around a parking lot. A temporary passenger’s brake was installed for the instructor, and Alex was allowed to coast, steer and brake without using the gas. Alex did so well that his instructor allowed him to practice giving the van a little gas the first time out. It didn’t take long before he felt comfortable behind the wheel. He had prepared himself by practising in the van without the engine running to get the feel of the equipment.
Video:
See Alex operate and use his van’s ramp. Part 1
Part 2 |
With all this preparation, Alex gained enough confidence to drive pretty much on his own after only two more lessons. He says, “The second time out, we went to another parking lot that was longer and we practised accelerating and braking and then practised a little bit of turning while accelerating and braking. And then the third time out we actually started in a residential area and … just hit it head on. I mean it was just boom, there wasn’t really any training at all to it.”
Balance was the only thing Alex recalls having difficulty getting used to. A chest strap was necessary to keep him upright. The chair has a bolt underneath it that hooks into the floor of the van and locks him in place.
In contrast to his feelings about some other assistive technologies, Alex doesn’t mind the adaptations to his van. “I thought it was like driving a jet aircraft or something. All my stuff is electronic and it does really look ‘sci-fi-ish.’ And I am kind of a sci-fi freak too, so here I am thinking, ‘Wow, this is really cool!’” The van also allows him to get around—he lives in a town where there is no public transit. Without it, he would be unable to pursue the active lifestyle he enjoys.
However, Alex has found some definite disadvantages to owning a minivan. He purchased it primarily to accommodate his ex-wife who preferred a smaller vehicle. The floor on his minivan has been lowered the maximum number of inches so he can get his chair into it, but his head still hits the ceiling inside. Worse, as far as Alex is concerned, is that the bottom of the minivan is only four inches off the ground—so low that it scrapes over speed bumps and can’t plough through heavy snow. The sliding door was once ripped off when the lip of the van got caught on a protruding manhole cover.
Alex would prefer a truck “because it looks neater than the van,” but there are two limiting factors on that choice for Alex right now. A truck would require an underbody lift, which means the ramp is underneath the vehicle, exposing it to the elements and uneven ground. It’s also a new technology and Alex would rather wait for it to be proven. Next time around, he thinks he will get a full-size van because even if the floor needs to be lowered, it would still be higher off the ground and higher inside.
Alex has a computer that he uses for recreation and gathering information. The computer has no adaptations. He can type quickly with only the aid of typing splints, using one finger on each hand. He finds the mouse hard to use, but he doesn’t want to go with a trackball. “I think that has to do with another appearance issue … just so I can say I use a regular mouse.” He feels that he does well with what he has and has no need for any high technology such as speech recognition. About the typing splints, Alex says, “They’re life savers. I love them. They’re really about the only adaptive devices, besides my van, that I really use on an everyday basis.” He uses them to dial the phone, to punch buttons on a calculator, to pick something up—for just about everything.
Alex makes do without resorting to specific assistive devices when possible. For example, he used to use a universal cuff to hold his eating utensils. He has since learned to hold a fork by wedging it between his fingers, so he doesn’t bother with the cuff anymore. Life is simpler without it—he used to have to take his own silverware with him when he went out to a restaurant, because their utensils wouldn’t fit the cuff and “that was a big pain in the butt to have to carry all this stuff around.”
Alex also makes do at home without adaptations by learning to “bear through it.” Fortunately, his house is accessible because it has an open floor plan and he can reach all the standard rocker-type light switches. When he first moved in, he found that some of the switches were a little high, but looking back on it, he’s glad they weren’t lowered to make them more accessible from his wheelchair. “I believe that having to struggle to reach that light switch helped make me stronger. Because now I can easily lift my arm up higher.” He is currently having some of the doors widened to make it easier to get through.
Alex’s main piece of advice to new consumers is, “Watch other people, watch how they do it and then don’t be afraid to ask questions.” He observes everyone—not just people in wheelchairs with spinal cord injuries. He might learn something from watching an elderly person cross the street, from people who are amputees, from looking at and talking to people with all kinds of different disabilities as well as from able-bodied people who are eager to share some insight from their own experience.
In Alex’s view, everybody uses different things, and they’ve probably got something to teach him, so in the course of a regular conversation, he’ll pick their brains for what they know. “I think that’s one reason that I’m able to do as much as I do on my own … I’m not afraid to talk to people.” For Alex, it’s an ongoing learning process and there’s no running out of new opportunities. He says, “I’m never going to be fulfilled unless I get 100% back, so for me every day, everybody I meet … I’ll pick their brain.”
 |
 |
 |
 |
|
- - - - - - - - - - - - - - - - - - - - |
Home © 1999 - 2009 All Rights Reserved |
