It has been nine years since Ray’s injury. In that time, he and his wife have built an accessible home from the ground up and raised their teenage daughter. Ray has experienced some significant medical complications that sometimes go along with spinal cord injury. He has had two serious pressure sores, one that was repaired with surgery, and a second that has been slowly healing over the last four years. Ray also has severe, chronic pain in his lower back, which limited his freedom and mobility for five years after rehab. This situation improved dramatically when Ray switched from his manual wheelchair to an electric with tilt/recline functions. His electric chair, along with his modified home and a “little organization” on their parts, are the primary ways that Ray maintains his independence around the house when his family is away during the day.
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Ray left the rehabilitation centre in the fall of 1993, wearing a back brace and pushing a manual wheelchair. The brace was necessary for controlling the pain in his lower back. “I wore a brace and that held my back straight up. I could stay up for hours and hours wearing a brace, but as soon as I took it off, the pain sitting up straight was unbearable.” In spite of the pain without it, Ray did not feel good about relying on a brace. “I wasn’t going to go through life wearing a brace … so I took it off. I just endured the pain, but it was a bit much.” At around the same time, Ray developed a pressure sore that laid him up in bed for about eight months, including some additional hospital time for skin-flap surgery to treat the sore. In that extended period of bed rest, Ray saw his physical stamina decrease from lack of activity. “Pushing myself around in a wheelchair was really hard and it kept getting harder as I got weaker.”
In the middle of these complications, Ray and his wife were overseeing the building of their new accessible home. Fortunately, Ray had signed up for extended benefits coverage at work just before his injury, so he had a settlement that covered the cost of the house and the accessibility features. The house was built in just three months, made to fit Ray and his manual wheelchair. The doorways were all nice and wide and there was a space at the end of the hallway for turning. Ray’s wife had a dining room table custom-built to provide adequate knee space underneath.
Unfortunately, Ray’s chronic back pain and decreased stamina caused a vicious circle that resulted in him spending less and less time in his wheelchair. “I used to lay in bed constantly,” he says. “I would lay in bed for weeks and weeks on end and only get up maybe once a month. It was that bad. Because it hurt so much to sit in my chair.”
Ray endured this situation for five years. Then he just got fed up one day and decided he had to do something about it. He recalls, “I was tired of laying in bed all the time and not having any mobility, not being able to go out and go and sit on my deck or go in my basement and play with my pool table or any of those things.” So he made a phone call to the occupational therapist and got things in motion for getting an electric chair. He says, “I knew the electric chair would help for mobility…. But I also wanted the tilt function on it for comfort, for sitting in a position in which my back does not hurt so much that I can only sit for an hour.”
When Ray first made his request for an electric chair, he received the typical response that “only quads get electric chairs.” But he was able to convince his occupational therapist and eventually, the government funding program, that because of his chronic pain and decreased strength, the manual chair was not a functional solution for him.
When he got the electric chair, the change in Ray’s quality of life was dramatic. He went from getting up once or twice a month to being up six to eight hours every day. He says now he can “get outside and drive around the neighbourhood and things like that, if I want to. Call paratransit if I want to go to a football game.” In short, he says, “I wouldn’t be without it.” As expected, the tilt system relieved the pain he was experiencing when he was up in his manual chair. “In this [tilted] position, I can sit for six or eight hours…. It just takes the pressure off the lower back and that’s where the pain is.”
When looking for an electric chair, Ray had a couple of simple requirements: “I wanted it to tilt and I wanted it to go.” The chair he got more than satisfies these requirements. It has four speeds, the fastest of which is about seven miles per hour or “jogging speed,” which Ray uses for “tooling around the neighbourhood.” It has both tilt and recline that is so comfortable that he can fall asleep in it if he wants to. It also has large tires on the front in case he wants to use it on grass or other rougher terrain.
Despite all of the benefits, there were some problems switching to the electric chair. Because it was so much bigger than a manual chair, some of the turning space designed into his accessible home isn’t big enough anymore. Also, Ray could no longer fit under their custom-made dining room table. He explains that his wife “looked for ages for a table that was high enough for me to slip under. And she bought this table, handmade to our specifications so that I could fit under it in my manual wheelchair. And then when we got [the electric chair], I couldn't fit under it anymore.” They solved the problem by getting a table with round marble top on a wrought iron pedestal that he can get under. Ray’s wife explains that she chose the design for a number of reasons. She says, “If he loses his balance at the table when he's trying to eat, he can grab the table, he's not going to fall. And the table being so heavy, isn't going to go anywhere.” She chose a pedestal so that Ray “can get the two pedals” around it and the wrought iron so that “it doesn’t matter if he nicks it.”
Ray also found that the tilt and recline functions on his electric chair had a few quirks. One time he was reclined and the chair just wouldn’t go down into a sitting position. He was trapped in his chair. They ended up calling 9-1-1 and the fire department came to his rescue. He recalls, “And then two big firemen came in and they lifted me out of my chair and into my bed. They’re good guys.” Fortunately, this happened when the chair was still under warranty, so the company sent out a technician who fixed it. It was simply reclining too far back. Then he had the opposite problem. The chair was in the sitting position and wouldn’t recline. By this time, the chair was no longer under warranty, so he had to pay for the repair. He says, “It was some little lead wire or something was corroded, and they just had to sand it a bit. Just a little thing, but it had a big impact” on the functioning of the chair.
Ray still has his manual chair. He can tolerate the pain of sitting in it for about an hour, so he uses it when he goes on short trips, to visit the barber or the dentist, for example. His wife often drives him in the family car for these types of outings, and the electric chair can’t come with him in the car. Ray knew to look for a lightweight chair when he was in rehab because he remembered that his father had had a “solid steel battleship of a wheelchair. I remember taking him out for rides and picking up his wheelchair, and it was heavy. And it was really hard to put in the back of my car. So I remembered that and I thought of that for [my wife].” In fact, he really liked his manual chair. He just couldn’t use it because of the pain. He chose it to be fast and sporty and able to turn on a dime. He remembers that he enjoyed zipping around the rehab centre in fast chairs and would have probably become involved with wheelchair racing, had it not been for the pain. As he puts it, “It’s the pain that’s the real crippler…. More than being paraplegic.”
When he was first released from his rehab hospital, Ray and his family found an accessible apartment where they lived for eight months while they sorted out their housing. They wanted a bungalow, but they quickly learned that they are relatively expensive, even without the required accessibility modifications. They figured the modifications would cost an extra thirty to forty thousand dollars, “and it’s never as good as if you just built it.” As a result, they decided to use Ray’s insurance settlement to build an accessible house from scratch. Ray’s wife did some research and found a builder with experience building accessible homes. They chose one of this builder’s bungalow designs, which they liked very much for its size. “It was 2000 square feet—a big bungalow.”
The house went up in just three months, and Ray is pleased that the house is suitable for people whether they have disabilities or not. He says, “The only difference is the wide doorways, which you don’t really notice.” The builder recommended 36-inch doors, which was a good thing because when Ray switched to the electric chair, the doorways were wide enough to accommodate it. They also built turning space at the end of the hallway where the bedrooms are, but that is no longer big enough to use with the electric chair. To turn around, Ray now has to drive into his bedroom, turn in there and come back out.
To get into his house, Ray uses a ramp from the garage. He also has access to the outdoors through a deck built off the back of the house. The deck doubles as a safety feature because Ray can get there easily from his bedroom.
The builder made indentations under the kitchen counters, called kick-spaces. These kick-spaces allow him to get his footrests under the counter so he can get close enough to use it. This arrangement works for the most part, but Ray wishes they had put in a full cut out under the sink. He says, “That's where I made a mistake over here by the sink. Where I have cupboards, there should be nothing there. I should be able to fit right under the sink, and I can't. I have to pull up parallel to it in order to do anything, rinse or wash anything. It's a bit of a pain, but they didn't suggest it when they were building the place, and I didn't know about it myself. I mean this was the first time I ever had to build a handicapped house and I didn't know anything about being handicapped before. I figured they knew what they were doing so I went along with them.”
The house has three bathrooms, but only the ensuite off the master bedroom is designed for accessibility. When Ray left rehab to go to an apartment, the OT equipped him with a shower bench and a raised toilet seat. But Ray says he ended up not using the toilet seat because it never fit on the toilet properly. He even had a fall because of it, so he said, “That's it, I'm not using that anymore.” He did use the shower bench in the apartment, but he decided on a wheel-in shower when he was building the house. He reasoned that with a wheel-in shower, he would be able to use a commode chair to access both the toilet and the shower. He had been introduced to the commode in rehab, so he knew that it would work for him.
Unfortunately, the bathroom sink doesn’t have a cut out either, so Ray is faced with the same problem in the bathroom that he has in the kitchen. He finds it awkward to wash both hands while parallel to the sink, but he can’t get closer because of the cupboard underneath.
Ray’s house has a basement apartment that was originally used for a live-in attendant. He found, with time, a little organization around meal preparation and his electric chair for mobility, he didn’t need an attendant, though he still has a nurse in once a day. In retrospect, the apartment for the live-in attendant was unnecessary. “I thought I needed an attendant, but as it turned out I didn’t. I was just inexperienced at being handicapped.”
Today, Ray has other uses for the basement, such as shooting pool. To access the basement, he uses a wheelchair lift. It has a platform that folds down, so he can just drive right on with his wheelchair, press a button and go up or down the stairs. Ray and his wife shopped around to get the best price. He ended up paying six thousand dollars for it, but some companies were asking as much as ten thousand. Ray figures “it was the cheapest form of elevator” that he could get, and “it’s been working fine” since it was installed.
Ray developed a second pressure sore about four years ago from accidentally sitting on a remote control for several hours, which he didn’t notice because of his lack of sensation. The plastic surgeon told him that the sore was inoperable. “He said, ‘The only way you're going to heal is to stay off of it.’ He said, ‘Lose weight and stay off of it as much as you possibly can.’ And it’ll take many years to heal.” As a result, Ray has had to experiment quite a bit with beds and mattresses to protect his skin. He says, “I have had many kinds of mattresses brought into this house, air-flow mattresses and so forth.” And they have ranged in price from twenty-five hundred dollars to fifteen thousand dollars. But none of them was as good as what he has right now. His current mattress has an air-filled cushion inserted in the middle, and foam at the head and the foot. He explains that he can adjust the air pressure in the cushion so that it is very soft, “and it keeps the pressure off the wound.”
Even with the special mattress, Ray has a strict schedule for sitting up and lying down in bed. He also has to roll over every few hours. Fortunately, he is able to turn himself. He doesn't use any kind of trapeze to help with the turning. He feels that moving himself helps to keep his arms strong. He says, “It would be very easy to lift myself up on [a trapeze], but I’d rather fight my way up.”
The other problem with the mattress is maintenance: patching and re-patching has been an “ongoing battle to keep the air in it.” They use “this resin-type stuff that's almost like airplane glue. And you just brush it on over the hole and it plugs up any holes. So I brush this stuff on over it every once in a while and it stops it from leaking…. And it seems to be okay for maybe six months or a year.”
Ray has this mattress on a hospital bed. It adjusts at both the head and foot, though he doesn’t use the elevation for the feet much. The whole bed also lowers so that Ray can transfer into his chair more easily. He raises it back up when he is in bed so that he can reach things on his bedside tables. He had been renting the bed for a number of years when an OT who was working with him decided to call up the company he was renting it from to point out that he had probably more than paid for the bed in the time he’d been renting it. Sure enough, the company agreed, so now Ray owns the bed outright and doesn’t have to pay rent on it anymore.
Ray’s bed has served him well except for one little incident just recently where it stopped moving. With a phone call, the company was able to direct him where to look, and it turned out that the screws on one of the axles had come loose. His wife got underneath the bed with some wrenches to fix it. After she did, the bed got stuck at a certain level when Ray tried to raise it. When they called the company again, they explained that the motor has to go through a full cycle to reset itself. They told Ray to lower the bed as far as it would go and then let the motor keep going until it stops. Ray says, “It kept going and going and going and going…. And finally it stopped.” After that, he was able to set it to the height he wanted again.
Because of his pain medication, Ray cannot drive himself. He jokes, “I’d go to jail if I tried to drive.” But his wife drives and they bought a car after his injury, which he now thinks wasn’t the best choice. He finds that the car is just too hard to get in and out of. “I would have rather we bought a van and then had the front seat on the passenger side taken out, and have clamps put in so that I could put my chair on the passenger side…. That’s what our next vehicle is going to be.” For now, Ray often uses the paratransit service in his electric chair when he wants to go out.
Ray has had only a couple of problems with his assistive devices and accessible home over the last nine years, but he wishes they had had more information when they were making some decisions. For example, an occupational therapist would have been a valuable source of independent advice when they were planning their house. Because Ray had already left rehab by then, they did not have easy access to a therapist, but he believes it would have been valuable to seek one out anyway. Consequently, Ray has straightforward advice for people with spinal cord injuries who are looking for assistive devices: get lots of help. He also recommends that people ask lots of questions and shop around a lot to get what they need at a good price.
From buying equipment to getting along as a family, they have had to learn as they went along. Many ordinary things change overnight after a spinal cord injury. Loss of spontaneity is a major change. Ray's wife describes it as “not being able to just get up and go out together, whether just to the grocery store, movie or dinner. All outings are an exercise in planning and organization….” Each trip requires careful consideration of transportation, weather conditions, accessibility and “what needs to be packed, even for a few hours.” This type of fundamental change in lifestyle requires adjustment and learning.
Ray’s wife also points out that after a spinal cord injury, a lot of your furniture will become “useless” all of a sudden. “End tables, dining tables and couches are too low. Coffee tables are just in the way. And wood furniture is just waiting to be nicked or gouged.” She offers the wrought iron pedestal table idea as a creative approach to meet the physical needs a family member with a spinal cord injury, while taking care of the house at the same time: “You want your home to look nice and clean and in good care,” she says.
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