Marilyn is a mother with two children, ages 21 and 8. Ten months after her spinal cord injury, she was involved in a second accident. While on a late-night stroll in the neighbourhood of the rehab centre, Marilyn was hit by a car and sustained a brain injury. Consequently, she has had to deal with both mobility and cognitive impairments. She also experiences varying levels of chronic pain.
It is now 18 months since Marilyn left rehab. She is in the process of negotiating with funders for equipment and home renovations to support her living in the community with her family. Marilyn finds that she has to spend a great deal of time and energy arguing for these needed adaptations with her primary funder, the state. At the same time, Marilyn is working to become an informed consumer, insisting on knowing all of her equipment options, regardless of funding issues. In selecting assistive devices, she continues to seek advice from her therapists, but she feels she is “more pushy” about the decision-making process than she was at first.
Go directly to:
In the early days, Marilyn had little sensation or movement in her arms and hands, so she initially tried a wheelchair with a sip and puff controller instead of a joystick. To drive, she would suck or blow air into a tube connected to an air-activated switch. Marilyn had trouble manoeuvring the chair this way and she found she was always bumping into walls. “I hated that chair,” she says. Soon, her hand function progressed to a point where she could try using a joystick. At first, she could only move the chair forward and backward. Without the benefit of sensation in her hand, she often didn’t know if her hand was on the joystick without looking at it and hearing the sound of the motors. Gradually, the joystick got easier to use and now Marilyn considers it “second nature.” To make a better grip, Marilyn uses a golf ball instead of the standard stick. (The rehab centre is located next to a golf course and as a result, there are lots of balls readily available.) Along with the better control, Marilyn likes the look of it.
Marilyn purchased her first wheelchair before her second accident. Uncomfortable about looking disabled, her choice was a basic wheelchair with no special features. “I wanted to get the plainest chair because I would not appear handicapped if I had a plain chair. My reasoning was so silly.” In fact, Marilyn regretted her decision almost immediately. After choosing this first chair, she started to notice other chairs and features that would have been helpful to her. So when her first chair was destroyed in her second accident, Marilyn wanted to make some changes.
Tilt is one of the features Marilyn wanted on her second chair. In order to maintain the condition of her skin and prevent pressure sores, it’s important for her to shift her weight periodically to relieve pressure. A tilt mechanism on a power wheelchair rotates the entire seat so that weight is partially shifted off the seat and onto the back. Marilyn considered this a good way to protect her skin, but she had to convince her funder. “We had to get quite a few letters to explain why I needed tilt from doctors and therapists for the insurance company to pay for it. Otherwise they would not have.” The letter writing paid off and her second chair has tilt. She tilts back for two to three minutes every hour to relieve pressure.
Even prior to her accidents, Marilyn had a curvature of the spine, or scoliosis. Marilyn’s injuries have left her with a tendency to lean toward one side of her body. In order to prevent further medical complications, she went to a special seating clinic where she was fitted for a custom backrest with lateral supports. These supports hold her upper body straight and firmly in place. She also received a specially designed cushion. Marilyn says that this cushion is better than the air-filled cushion she once used and adds, “The back where I sit is almost non-existent … like a hole.”
Marilyn has chronic pain on one side. “A lot of lay people don’t know it, they think if you’re paralyzed you don’t feel anything. But I think a lot of quadriplegics and paraplegics have pain and they just live with it. They don’t have a way out.” Because her pain starts in her hip and runs down through her leg, Marilyn thought it might help to use elevating leg rests as a means of changing position. She got a set but they kept breaking, and Marilyn found that elevating her leg provided only temporary relief. She now uses standard leg rests and relieves her pain by tilting back in her chair. She says the custom cushion also helps.
Because of her second accident, Marilyn is very careful about making herself easily visible to cars when she is out at night. “You have to have lights and tail lights, and the reason I got hit was because I had no reflectors on my chair and it was dark and I was dressed dark.” She wishes there had been reflectors on her first chair, which may have prevented the accident.
Marilyn uses a laptray that mounts to her chair for meals and writing. Although useful, she finds it a bit of a mixed blessing. “When I have the tray on, I’m claustrophobic. If I’m doing something I’m just fine and all of a sudden when I’m alone and everybody’s gone and I’m not doing anything, I want out of this. So I have to remember to have them take it off before they leave and I don’t go crazy.” She finds the tray useful though, and so she puts up with the confined feeling. “It’s not like I hate it, I don’t. It’s helped a lot.” Marilyn would like to purchase a laptray like one she has seen with “sandbags on the side” that simply sits on her lap without being mounted to her chair. This type would allow her to put it on and take it off independently.
Marilyn also uses medication to help manage her pain. “I can function with pain too, but I get short with people.” She actually has a surgically implanted medication pump the size of a hockey puck in the left side of her abdomen. The pump contains two different medicines: one for pain and one for controlling involuntary muscle spasms. It holds a two-month supply of medication, which is time released directly into her spine through a thin tube.
Although not entirely pain free, Marilyn says she would be in “excruciating pain” without her medication. She still has to take some pills on a daily basis, but she can miss her oral medication from time to time without any ill effects. For Marilyn, the medication pump greatly reduces the number of pills she must remember to take, and because the medication is released directly into her spine, she finds she doesn’t experience side effects such as giddiness or drowsiness.
Marilyn’s parents renovated their home in order to accommodate her needs. In addition to widening doorways and other minor modifications, they built a ramp for outside access as well as a main floor bedroom. They also had a room built in the basement for Marilyn’s daughter so that she can be close to her younger brother’s room. Some modifications are still to be done, most notably the addition of a wheel-in shower, and Marilyn and her family are negotiating with funders for these renovations.
Marilyn wanted her son to start the school year at the school near her parents’ house, so she decided to move in there before the ramp was built. Unable to get in and out without assistance, Marilyn limited her activities temporarily. The ramp was built soon after she moved in, and her family was reimbursed through a publicly funded program.
Marilyn doesn’t have an automatic door opener, however, and when she was leaving her home recently, she had difficulty shutting the back door. She recalls that on another occasion, she dropped her keys and had to wait for someone to come along and help her into her house.
Currently, Marilyn and her family are working on approval for an accessible bathroom. While in rehab, Marilyn became accustomed to having a “regular shower” and in recent months, she has had to manage with bed baths. Although clean, Marilyn wants to be able to have a “shower just like everybody else.” While awaiting funding approval for a wheel-in shower, she and her mother are looking into the best way to get the renovation done.
Marilyn has not been satisfied with her personal care assistants (PCAs) and recently changed companies. One of the problems was that the PCAs didn’t know how to transfer her by hand, and she had to use a portable lift to move between her wheelchair, commode and bed. She finds the lift cumbersome and time-consuming, not to mention painful, and would prefer to be transferred manually. Once the situation is straightened out, she plans to have her PCAs trained to do manual transfers at the rehab centre. Her therapist has said that they can come in and learn how to do it any time.
To wash her hair, Marilyn uses a tray that rests on her shoulders. She tilts her chair back and the tray is placed in the sink so that the water runs down it and directly into the sink.
Video:
|
Marilyn says she used to place the cordless phone on her lap while dialling, but then she would have trouble picking it up and getting it to her ear in time. Now she finds it easier to pick up the phone and dial with her tongue. In addition to the cordless phone, Marilyn also has a cell phone for emergency purposes such as wheelchair malfunctions. She has a speakerphone but senses that many of her callers don’t like it because of the sound. At one time, she had a headset for this phone but it broke when it got tangled in her chair. She plans to replace it.
Marilyn’s family and friends bought her a computer to help give her “something to do.” Although she is able to use a conventional keyboard, her ability to use a mouse is affected by a hand tremor. Marilyn would prefer to use the trackball she tried at the rehab centre. She bought a similar one, but the ball turned out to be too small. She continues to use a conventional mouse for the time being, but she wants to get a suitable trackball in the future.
Marilyn’s computer sits on a low desk that she cannot get under. Until she has it modified with a cut out, she must sit alongside the desk and use the computer from a sideways position. She says she types slowly using one finger or a pencil, and uses the computer primarily to communicate through email with family and friends across the country.
Marilyn was introduced to speech recognition while she was in rehab. She did mechanical drafting for a living before her injury, and she would really like to explore the use of speech recognition with drafting software. “And then I might be able to get some work.” She has a copy of the speech recognition software but is finding it complicated and difficult to install. She says, “You have to read all this stuff and it takes us forever.” Marilyn says she can get by without speech input for now and that, “It’s on the back burner.”
In spite of the accessibility problems, the computer plays an important role in Marilyn’s relationship with her eight-year-old son. For her, parenting with a disability can be difficult and “awkward.” Marilyn worries about the lack of physical contact with her young son. Although he sits on her lap and she is able to hug him with one arm, Marilyn wishes she could reach out and put both arms around him. But he is thrilled with computer games and the two of them often play them together.
Although she doesn’t drive, Marilyn recently purchased a used van that is equipped with a lift and tie-down system. Family members drive and they like the spontaneity the van gives them for outings. To get around by herself, Marilyn relies on either conventional buses or the paratransit system. Before ever using the conventional bus system, she called to confirm that all of the buses were accessible. In fact, Marilyn says she has never experienced any difficulty boarding these vehicles, but she sometimes has difficulty manoeuvring her wheelchair once inside if there’s a crowd. She finds the paratransit system useful for planned trips and appointments, but she doesn’t like having to plan four days in advance.
Video:
See Marilyn smoking with the help of her cigarette holder. Choose a format: |
Marilyn has a long cigarette holder made of onyx. Due to limited sensation in her hands, she is unable to determine how tightly she is holding her cigarette or if she is being burned. The cigarette holder gives her a better grip.
In the years since her accidents, Marilyn has learned a great deal about assistive technology and ways in which assistive devices can help her manage her pain and maintain relationships. Through her experiences with technology and funding bureaucracies, Marilyn has become increasingly aware of her technology needs and pursues them with the support of her family. Today, Marilyn takes an active role in the decision-making process and believes that she should always be presented with all of the options even if funding is questionable. In her words, “I should be approached with the best that is available and find a way to get it covered. And if I can’t, I can [downgrade], but I should be able to see what’s available.”
 |
 |
 |
 |
|
- - - - - - - - - - - - - - - - - - - - |
Home © 1999 - 2008 All Rights Reserved |
