Mary’s first concerns after her injury were how she was going to walk again and how she was going to drive again. She remembers, “Nobody really told me I was paralyzed…. They never told me I wouldn’t walk again.” Those were confusing times with many questions about how she would accomplish everyday tasks. With time, Mary came to accept her paralysis and realized that a wheelchair was to be her main means of getting around. “I kind of said, ‘I’ve had my time as a walker. It’s time to have my time as a wheeler.’” Her physiotherapist and occupational therapist at her rehab centre helped Mary figure out ways to do things for herself, which is very important to her. Mary lives with her family, and she doesn’t want to have to rely on them all the time. She says, “With the technology I have, it’s helped me a lot because I can do stuff by myself…. I don’t need Mom or Dad or my sister … to help me…. It’s helped me a lot to be on my own and do my own thing.”
Motivated by this desire for independence, Mary and her family have done a great deal of work incorporating a wide variety of assistive devices into their lives. Having met the basic needs, Mary and her family have moved on to some important next steps, including getting Mary able to drive again. They live in a fairly remote rural area and as a result, being mobile is important to Mary. “Some days, I just want to get in the van and drive but I know I can’t.” The only thing in the way now is the licence. She has purchased an adapted van and she working on getting her licence again, having taken the necessary driving lessons with the van.
Mary is also tackling some issues caused by the spinal cord injury itself. She has high muscle tone and her spasms can throw her out of her chair if she is not wearing a seatbelt. She has also developed chronic pain, a common problem after spinal cord injury. Assistive technology figures in Mary’s current and future plans for managing these conditions, especially as they impact on her freedom and mobility.
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The wheelchair that Mary’s therapists recommended for her in rehab was just right, and she made sure to purchase that model when the time came. It is a lightweight, folding chair, which makes it easy for her parents to pack in a car. Mary was also thinking about plane travel when she chose her chair. She asks, “How are you going to get a chair that doesn’t fold up on a plane?” Other than these considerations, Mary describes just wanting an ordinary chair that she can be comfortable in. Her list of requirements is actually quite short. She isn’t concerned about details like colour, for example. (Hers is black.) “Nobody’s going to comment on the colour,” she says.
Mary describes the various features of the chair that make it comfortable for her. First of all, the height of the back is “just perfect.” And the backrest is adjustable. Mary explains, “If I want to slouch in my chair, I just lift the Velcro up and just loosen up the Velcro…. If I want to lean back or you know, put my legs up whatever, I can do that. Or if I want to sit up straight I just tighten the straps.”
Another important feature of Mary’s chair is its high armrests. She likes to be able to rest her arms, because it gives her more stability. With her level of injury, she doesn’t have full balance in her torso, so she is glad to have the armrests to grab onto in case she starts falling over. The high armrests also help Mary stay in position when she has spasms. Finally, they are removable, which comes in handy in many everyday situations.
The other feature on her chair that Mary particularly likes is the “hill-stoppers.” She explains that a hill-stopper is a device that you clip on to your wheels when going up a hill. Then, “if you want to take a break or rest, you just let go, and … you can’t go backwards.” Besides hills, they come in handy for her ramp and walkways.
High muscle tone and spasms are definitely a consideration in Mary’s seating. Her first defence is a seatbelt. “My tone also flips me back in my chair and my butt will move forward…. If I didn’t have a seat belt, I’d be going off my chair.” She has a strap around her ankles to prevent her feet from kicking out. Mary also has discovered a homemade piece of technology for dealing with her high tone—a 28-ounce can of tomatoes that she keeps between her knees. “I use it as a pummel,” which, she explains, is “like a sponge, just a, a round sponge that people just put between their legs to keep them from … smacking together.” She couldn’t use a regular pummel made out of foam because her tone is so high. “Once my legs smack together, they’ll just crush it.” Mary’s physiotherapist wasn’t sure about the safety of a hard can of tomatoes for this purpose. She was afraid it could cause the skin on Mary’s knees to break down. But Mary thinks it actually helps her prevent skin breakdown on her knees where they would otherwise rub together.
Mary is on her second chair since her injury. She had to get a second chair after one year because of weight gain, which is not uncommon with a spinal cord injury. But she chose the exact same model chair as her first because she liked it so much. The second one is just a little wider.
Video:
See Mary access her van and explain her H-strap. Part 1
Part 2 |
Mary’s other set of wheels is her full-size van. Her remote location, along with recommendations from her father and friends, influenced her choice of vehicle and its features. Mary consulted others with spinal cord injuries on her choices, and she was able to try out three different vehicles before she bought hers. She remembers that they considered the options: “We looked for cars. We looked for trucks.” As to a car, Mary’s objections were, “You know, you’ve got to pick up your chair, fold it up, something like that, that wasn’t really an option for me.” The trucks that they looked at had similar disadvantages for loading and unloading a wheelchair. In the end, they decided, “the best vehicle was a van.”
The seats in Mary’s van are adjustable. “I have the seats in the van, when I transfer into the seat, they turn. They also go up and down, and they go forward and backwards.” Looking back, however, Mary wonders why she didn’t set it up so that she could just drive from her chair. She finds transferring a lot of work. “If I’ve got a really busy day, you know, you’ve got to go from your chair to the seat, seat to the chair, chair to the seat, seat to the chair.” Unfortunately, she is stuck with this feature until it is time to replace the van, because changing it now would be too difficult.
Mary is a little nervous about driving a full-size van. She is used to driving her father’s truck and her mother’s Jeep, but a van is something new. She finds she has to make wider turns, and she can’t see out the back of the van. Worse, her accident included a neck injury that makes it hard for her to turn her head to the right. To increase her safety, Mary uses an electronic obstacle detector. She describes it: “There’s something on the back of the van…. The closer you get [to something behind you] the faster it beeps.” She calls the system annoying, but useful. She also uses convex mirrors attached to her side-view mirrors to improve her field of view behind the van.
Mary drives the van with hand controls. She was able to try them with a local driving instructor who has an adapted van for teaching people with disabilities the new driving skills they need to get back on the road. She says, “I went driving in his vehicle to get a feel of the hand controls, and [to see] if those ones are the right ones for me, because there are different hand controls.” She liked the ones this instructor had, and her occupational therapist, who is helping with her return to driving, agreed that they worked well for her. Mary describes the hand controls that she had installed on her van this way: “It’s like, it’s like a motorcycle handle with an Allen key. The Allen key is the speed, and the motorcycle handle is the brake.” On the recommendation of her occupational therapist, “I also have the spinner knob on the steering wheel.” The spinner knob helps with turning, because “you can’t palm your corners and you can’t turn a corner with one hand.” Mary finds this hand control system very comfortable.
Mary’s high tone also has an impact on her driving. She nearly fell out of her seat once when she was turning a corner, so now she uses an H-strap to stay upright. As the name suggests, it is an H-shaped strap that goes around both Mary and the seat. It reminds Mary of the straps on a life jacket. It attaches with Velcro, and she is able to put it on herself easily. She then uses the seatbelt over top of the H-strap. She says, “So basically I have two belts to keep me in my seat.” Mary’s legs must also be positioned in a certain way to keep them from pushing her back if she goes into spasm.
One of the advantages of a full-size van is that Mary will be able to travel long distances in it once she gets her licence. She has a bed in the back and the windows have blinds and are tinted for privacy, so she can rest and do her catheterizations on long trips. She also has three electrical outlets that she can use for a television and microwave. She expects she will use the microwave to heat up a “magic bag” when she gets sore or really cold. A magic bag is a cloth bag filled with a rice-like substance that can be heated in a microwave or cooled in a freezer and then worn like a hot-water bottle.
The geography and weather where Mary lives dictated some of the other features of the van. To get into the van, Mary uses a special kind of lift that hooks onto two straps on her wheelchair. The lift pulls on the straps and lifts her into the van. Mary chose this lift arrangement over a ramp because of where she lives. She explains, “A normal wheelchair ramp has to work on even ground. I don’t live on even ground. So the [lift] was best to have for me.” She is glad that she was able to see this particular lift in action on a friend’s vehicle. On the question of whether Mary should choose a lowered floor or a raised roof to modify her van for her wheelchair, it was no contest. With a raised roof, “the wind would gust us right off the road. The wind really interferes with the vans that have higher ceilings.” Mary also has a satellite phone in the van for safety on remote roads because not all areas have cell phone service where she lives.
While Mary was in rehab, her father worked with a contractor and Mary’s case manager on the house. They finished the job in just two weeks. They took up the carpet and replaced it with hardwood floors so that it would be easier to wheel around. To allow Mary to get into the house, they built a wooden ramp and a walkway over what had just been sand before. They also removed a wall and installed a wheel-in shower. Mary would definitely include a wheel-in shower in any home that she would design for herself.
Another nice feature of Mary’s bathroom is a heater that is mounted on the wall. Since her accident, Mary finds she is cold most of the time. “When I come out of the shower I’m cold, and I put the heater on. So if I’m cold I go in there, I shut the door, I turn it on and I am instantly warm.” The heater is also handy for drying articles.
Another way that Mary and her family adapted their home was to simply move things around. They considered getting an elevator so that they could have the TV room upstairs, but decided that an elevator would do too much damage to the house. So they just moved the TV room downstairs. Originally, Mary’s parents moved their bedroom downstairs to be closer to Mary in case she needed anything or in case of an emergency. When they moved the TV room downstairs instead, they addressed this safety concern by installing an intercom system in Mary’s room, her parent’s room and in the garage.
Safety was the main concern behind a couple of other adaptations. All of the electrical appliances in Mary’s bedroom are wired to a generator that will keep things going during an emergency or power outage. This is no small concern since, where Mary lives, they have lost power for up to four days at time. They have both a lift and a ramp leading out of the house so that Mary can get out if there’s a fire.
To get in and out of bed and reposition herself independently, Mary has a T-Bar on her bed. She says, “I love that thing. I wish I could take it with me when I travel, but it doesn’t fold up.” She describes it: “There’s two little legs that go underneath my bed. And then there’s a chain, and then it’s got the triangle bar.”
Another fairly simple piece of equipment that Mary “just loves” is her shower tray. She discovered it when she went to her hairdresser to get highlights in her hair. She takes it with her when she travels. “If there’s a hotel that does not have a roll-in shower, you know, I can just take my shower tray and … wash my hair from the bathtub or … from the sink…. I just hold it over my neck and Mom washes my hair.” She was able to get one from her local wheelchair vendor.
Mary describes herself as someone who hates exercise, but she loves her arm bike. She just decided recently that she wanted an arm bike just like the one they had in her rehab hospital, but her insurance company said one like that was too expensive. But they did pay for a regular exercise bike that can be used with either hands or feet, and she put it on a table where she can use it. She can adjust the tension on it to make it harder or easier to push. She was able to get it at a local department store and she finds it useful for relaxing her shoulders. In fact, she says, “It’s just loosened my body right up.”
Before her accident, Mary enjoyed boating and fishing. She says, “I was practically raised on a boat.” So she is looking for a device that will help her board her family’s boat and keep her secure once she is there. She would like something that would allow her to stay her in chair once she is on the boat, but she and her father haven’t come across anything yet. They have seen a sling-lift that one of their friends uses, but it wouldn’t be suitable for their boat. Mary is hopeful that she will eventually find something.
Mary’s advice to others who have spinal cord injuries is to find out everything you can from as many sources as you can to make yourself as independent as possible. She includes among these resources, web sites, assistive devices vendors, rehab professionals, community organizations and self-help groups for people with spinal cord injuries, government resources and books by people who have gone through similar experiences. In fact, Mary suggests that people talk to everybody they can think of. “They’ll tell you everything you need to know” to help make wise decisions about assistive technology.
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