Sandra is an extremely active individual who has had a C6/7 spinal cord injury for 33 years. She has competed in three separate Paralympic Games as a swimmer, and in addition to swimming, she snow skis and rows regularly. Sandra and her husband, who also has a spinal cord injury, have raised a son. Finally, Sandra is a social worker at the local rehab centre, where she counsels people with recent spinal cord injuries and other mobility impairments.
Sandra’s approach to technology is minimalist in nature. She prefers to do things on her own and only uses technology in circumstances when she has no other options. She takes this approach because the level of physical activity required to perform daily tasks is an excellent way to maintain her functional capacity. Sandra recognizes that assistive technology is likely to become more significant to her as she gets older. From this standpoint, Sandra readily seeks out devices that help her maintain her level of activity and independence. Her approach to acquiring devices is simple and pragmatic. While she learns about options from a variety of sources, including other rehab professionals, she especially values equipment advice from other individuals with a disability. Sandra’s husband of 24 years is very good mechanically, and he has adapted or made many pieces of useful equipment for her.
Go directly to:
Sandra’s son is now 20 years old. When she and her husband were first considering having children, she remembers her doctor discouraging her. “He said that the pregnancy would be too hard on me as far as kidney problems maybe, or bladder problems. And then he said he didn’t know of any other quad women who had had children. And he said if I had a child it would be too hard for me to take care of … I was really angry.” Another difficulty was that Sandra and her husband had trouble locating information about equipment they could use to help raise a child. “Right before he was born I tried to find information on adaptive equipment and I had a hard time finding it because there weren’t that many other quadriplegic women at that time who had had children.” (Since that time, organizations have been developed specifically to provide information and advice to parents with disabilities. Sandra says, “There’s Through the Looking Glass, which is an organization that helps with parenting and disabilities and they have a lot of assistive devices.”)
In spite of the lack of information in 1979 about parenting with a disability, Sandra and her husband weren’t totally in the dark. “My husband and I compete in wheelchair sports and I knew of another quad woman in the 70’s who had raised her child. So I knew if she could do it, I could do it. Then my husband and I gathered information about child care adaptations and decided he would help design some. He’s paraplegic and he’s real good mechanically. And we talked to other women who had had children.” Sandra’s husband built a changing table at the right height for Sandra, “so I could roll up underneath it to change the baby’s diapers.” They added a shoulder strap to an infant car seat so that when the baby was first born she could carry him around on her lap. For nursing at night, they decided to use a small infant bed on a rolling TV stand. This way, the baby could sleep by their bed, and he would be at just the right height for her to slide him across and bring him into bed with her when he needed to be fed. They also found a high chair that she could manage with one hand.
When the child started getting older and more mobile, Sandra needed to find strategies for keeping him close by. “When he was two, that was the hardest time, because I couldn’t chase him. My husband could catch him most of the time.” To start with, Sandra attached a seat belt to her wheelchair so that she could keep him on her lap. “I had a Velcro seat belt on him until he was like six months old. And then after that he was able to take the Velcro off, so then I used a regular seatbelt on his lap.” They also tried a harness with a long rope, “but he would climb up on people’s porches and ring their doorbells. And I’d have to reel him in and that was hard. So when I took him places that I knew weren’t safe, then I would take a teenager with me to help…” They also found a very large playpen called a corral, that they could take out with them to places like the beach. By the time he was three, the situation improved. “I knew if we were going to cross the street, I could count on him to hold on to my wheelchair.”
Sandra places a high value on all different kinds of physical activity and recreation. She is an elite swimmer, having competed at three different Paralympic Games, starting with the Heidelberg games in 1972, and most recently, the Atlanta games in 1996. Sandra credits staff at her initial rehab centre for showing her opportunities for competitive sport right after her injury. “The occupational therapist took me to the National Wheelchair Games—went with me a year after my accident.” Sandra is very clear about what exercise has done for her. “I think it keeps me mentally and physically healthy to be active and exercise. Swimming I think has helped me more than anything else since my accident.” Today, Sandra goes to the local pool four times a week. The only equipment she uses is a lift to get in and out of the water. For example, to get out, Sandra just positions herself on the lift’s seat under the water. “It’s like a pump and the seat goes down and you slide onto the seat and then it goes up and swings out. Then you can transfer into your chair.” However, when assistance is available, she prefers using facility staff to manually transfer her in and out of the pool.
Besides swimming, Sandra gets a lot of satisfaction from outdoor recreation, especially skiing. She and her husband decided to try the slopes ten years ago, and they have been going every year since. “It was my favourite sport before my accident so it was like giving something back that was wonderful … I got hooked, got addicted to it.” Part of the addiction for Sandra is the challenge. “I think it really builds your self-esteem because if you can ski you can do anything. It’s really so exciting. You’re outside and it’s an adventure. I’d recommend it to everyone.” She is quick to point out that skiing is an option for those with more involved disabilities as well. “Any disability can ski. No matter how severely disabled you are they’ll have you in there. And the instructors are wonderful.”
Sandra uses a bi-ski, which has a bucket seat mounted on two skis. She also has two poles, called outriggers, with smaller skis on them to help with balance and steering. Because of a lack of grip, Sandra attaches the outriggers to her hands with duct tape. The more modern bi-skis are very responsive to subtle weight shifts. “Lean and move your hips in the direction that you’re going and it takes you.” As well, the bi-ski can be taken on a chairlift, thanks to a hydraulic mechanism that pumps the seat up to chair height for the ride and then collapses it back down into skiing position at the top of the hill.
Because of where she lives, Sandra often takes advantage of the ocean as a source of recreation and leisure. She has been rowing for a few years now, a sport she enjoys immensely. The adaptations are minimal. “They have gloves that you can put on that are Velcro and you can attach them to the oars.” She has also tried sailing and kayaking, but prefers rowing because she doesn’t get enough exercise in a sailboat and she finds kayaks more difficult to control. “Kayaking is not my favourite thing because I move around a lot and it’s tippy.” Finally, Sandra enjoys waterskiing. Like the snow ski, the waterski has a bucket seat, and a rope attaches the seat to the boat. A lookout person in the boat has the additional responsibility of managing the rope. “If you fall, then they drop the rope so that you’ll fall.” Once everything is in place, Sandra finds she gets quite a rush out of waterskiing. “I’m chicken, I don’t go outside of the wake … my husband … goes whipping outside back and forth through the wake. And I’m just holding on for dear life in the middle. So it’s exciting. Yeah it’s exciting.”
Bowel and bladder management are inescapable facts of life for most people with a spinal cord injury. According to Sandra, “The bowel and the bladder are the most difficult things in being in the wheelchair. Being in the wheelchair is not as hard as the bowel and bladder problems.” Being a very active person, Sandra has had to find methods and technology to allow her to stay healthy without sacrificing her lifestyle. For one thing, she and her husband have had real difficulty finding a raised toilet seat that was not too high. In Sandra’s experience, the usual four-inch lift is too much for a transfer from a manual wheelchair. Unable to find an acceptable commercial product, Sandra’s husband adapted one to reduce the space to two inches, which works well. Sandra and her husband take this adapted seat with them when they travel.
Sandra’s bladder management strategy is intermittent catheterization, which as the name implies, requires her to insert a catheter periodically. She removes it as soon as her bladder is empty. “I’ve been doing intermittent cath for about 23 years.… It’s really kept me healthy. I don’t have bladder infections, maybe one a year.” Sandra finds public washrooms unpredictable in terms of accessibility. “It’s more difficult, it takes more energy, and the toilets aren’t always set up. At home, I use a toilet that has a padded raised seat on it and a grab bar. In the community it’s always difficult.”
Because Sandra is unwilling to compromise her level of activity, she has had to be innovative about intermittent catheterization in the community. She consulted with staff at the rehab centre to find a solution. “The rehab engineer and OT at the rehab centre designed a board that I can put on the toilet seat when I’m out in the community and this board has a hinge on it so I can fold it up and put it in my bag. I put it on the toilet seat and then I can prop my legs up … so I don’t have to transfer onto the toilet.” Along with this hinged board, Sandra carries an unbreakable mirror to help her insert the catheter: “For women it’s harder—you have to be able to see what you’re doing.… Women need the mirror so they can see where they’re aiming with the catheter.” Finally, for the sake of time and convenience, Sandra has had her pants modified with an easy Velcro opening so she doesn’t have to take them off. Sandra’s approach can even be used if the place she is going has an inaccessible washroom. In these cases, Sandra puts a legbag on the other end of the catheter and she just needs to find a room with a chair to prop her legs on. She can even do this in the back of her van when necessary. She empties the legbag the next time she is near a toilet. All of these adaptations add up to an effective bladder management strategy for public washrooms, which Sandra considers very important. “I can go any place at any time and be independent. And some women at my level, they can’t go out and do things because they have to either wear an indwelling catheter, which tends not to be healthy, or they have to go home and do the intermittent catheterization, or they have to have someone else to do it for them.”
Video:
See Sandra transfer from her wheelchair to her bed. Choose a format: |
Sandra finds that as she gets older, she is having another look at energy saving devices that she didn’t bother with in the past. “I never used to use the sliding board for transferring, but about three years ago I started using the sliding board … it’s easier to do it, it’s not as much effort.… And I don’t have as much energy now that I’m older, 51, and I’ve been injured for 33 years.… I think most people don’t have as much energy as they did when they were younger but I think when you’re in a wheelchair it takes so much more effort to do everything. And it takes so much longer to do everything. So I think anything you can find that will preserve your energy, as long as you’re still able to be active, is really good.”
Sandra is quick to emphasize that staying active is the key. Her first appearance at the paralympics was in 1972 and her most recent was in 1996. She believes that the long length of her swimming career is a direct result of her efforts to stay in shape, and getting older has not affected her ability to compete. Along these lines, Sandra doesn’t feel like she needs to switch from her manual chair to a power chair. “I thought about it, but at this point I like the exercise. As I get older, I’m not as active now and I gain more weight, and I really think the manual chair is going to help me with my exercise. But I think it’s fine if some people are in power wheelchairs if that’s the choice they want to make. But right now I’m not ready.… And it doesn’t bother me if I need help getting up something that’s steep, I just ask somebody to help me. For now it’s fine. Now maybe a few years down the road, I will want a power chair.”
One thing Sandra does find very helpful is a daybed in her living room. She has “nerve pain,” another common problem associated with spinal cord injury. When she is feeling tired or the pain flares up, she transfers onto the daybed to change position and rest. “I can lay in there and I’m off my buttocks which tends to have pain. I can talk on the phone, I can write, I can work. And I think that’s one thing that I’m doing that is helping … to rest more.”
Although Sandra recognizes that her needs are changing over time, she is optimistic about finding devices that will meet those needs as they arise. “I think as I get older, it’s going to be harder for me to transfer onto my bathtub bench, so I may have to find assistive technology that would transfer me.… I think we’re in the day and age where we’ll probably always have hope for aging and disability, because better technology keeps coming up.”
Sandra uses a manual chair with air-filled tires and “rubber-coated” push rims that help her get a good push. When she is choosing a wheelchair, Sandra gathers information from all kinds of sources, but she puts special emphasis on the advice of other people who use wheelchairs. “I think that works for me better than talking to the physical therapist or the occupational therapist, learning from other people who are disabled.… Because sometimes I think that the disabled person who has the devices may know more than the OT or PT because they’re living with it. But I can get information from the OTs and PTs also. I mean to find out what I want, I usually explore a lot of different options.”
For seating, Sandra uses a “floatation cushion,” with a combination of water and foam. Although it weighs 18 pounds, Sandra puts up with the extra weight because she finds that the cushion helps with the chronic pain. As well, it helps keep her skin healthy. “It keeps me from getting hot, from getting warm, so that prevents pressure sores.”
Sandra has not had as much success finding a good positioning system for the back of her chair. She has scoliosis, a curvature of the spine, that she wants to have addressed through seating. She tried lateral supports, a solid seat insert, and a special cushion, none of which worked for her. Sandra describes the situation as a basic trade-off between good positioning and independence, and she’s not willing to sacrifice independence. “It’s important for me to be healthy and I do want to sit up straighter, but if I use these assistive devices I’m not independent and my life is more difficult.” The most recent device, a specialized back support, was too tall. Sandra found that she couldn’t dress independently any more and couldn’t get low enough to the ground to pick things up off the floor or take dishes out of the dishwasher. “So I’m not happy … every time I’m evaluated by a physical therapist, they say, ‘Well, let’s do this.’ So, sometimes I’ll start the process, and then when I’m ready to say what I really want, I go back to exactly what I’ve had before.”
Sandra is in a special position to give advice about living with a spinal cord injury. In addition to her own injury, which she has had for 33 years, her job as a social worker involves giving advice to people with recent spinal cord injuries. Not surprisingly, when she is working with a new client, “The first thing I tell them about is the recreational adaptive technology. I think that’s really important. I usually give them information about places that sell vans if they’re interested in vans, and then I also have them network with other disabled people who have the type of vans that they may be interested in…” Sandra does not have any doubt about the value of getting out and participating. “I think you get out and you meet people and learn from other people and they learn from you and you’re out having a good time. I think recreation is really important for everyone.”
 |
 |
 |
 |
|
- - - - - - - - - - - - - - - - - - - - |
Home © 1999 - 2008 All Rights Reserved |
