For Max and his wife Helen, the aftermath of his injury felt like “a no-man’s land.” His accident changed everything for them and, as a result, the two suddenly found themselves needing to make many life altering decisions all at the same time. Confused and unprepared to deal with these decisions, they turned to the professionals around them for assistance but found that “no one seemed to know what to do.” Frustrated and dissatisfied with the advice they received regarding major purchases, Max and Helen felt that they had no choice but to take matters into their own hands. With the financial means to pay for the essential assistive devices, and a growing understanding of Max’s needs, they began to seek information and answers to their questions by turning to fellow consumers and dealing directly with vendors and suppliers.
From the beginning, Max’s primary focus has been his physical rehabilitation. Gradually, he came to believe that assistive technology could help him meet his objectives. His choices in assistive devices reflect his continued commitment to developing his physical functioning and independence.
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For Max and Helen, selecting a suitable wheelchair was a difficult process complicated by a lack of clear information, and confusion between them and the numerous professionals involved in Max’s rehabilitation.
When Max first got to the rehab centre from the acute care hospital, his functioning was limited to moving an index finger and a toe. He could only sit up for two hours a day. Because he was unable to operate a power chair at the time, he had to use a manual chair and rely on others to move him around the rehab centre. He says that he would sometimes get stuck in his room and would have to yell for someone to take him somewhere. Max didn’t like being dependent on others and was extremely frustrated by his lack of control.
Although he was making progress, Max’s arms remained very weak. Eventually, he was faced with the prospect of having to use a power chair with head controls. He had always feared having to use a wheelchair and so this was a “frightening” time for him. Because his head was the one part of his body he could still move, Max was concerned about overusing and straining his neck muscles. At first, he felt self-conscious using head controls and says he found this technology “awkward, very strange … I felt like an oddball.” Max says the peer group discussions at the rehab centre helped him “get rid of this nonsense.” With the support of these group discussions and meditation, Max began to feel less self-conscious and developed a more positive outlook and self-perception. He recalls, “I got so I could wheel around with my head. I was smiling, saying ‘Hello’ to everybody … back to who I was.”
Encouraged, Max started exercising with putty to develop strength and control in his hands. Regaining the use of his arms and hands was very important to him, because among other things, this would eventually enable him to operate his wheelchair with hand controls. Max says, “Now I saw [the chair] as a great possibility … even more than a possibility, it was the answer to my finally entering the outer world.”
Initially, Max was given a wheelchair from the rehab centre, but eventually, it came time for him to purchase his own chair. Max and Helen considered this a major purchase and upon reflection they agree that the process of selecting the right chair was a difficult, frustrating experience for both of them. Helen points out that this was “a very emotional time. And you’ve never really had to look into the purchase of [a wheelchair] before. You’re wanting to make sure you’re not making a mistake.” For Max, this decision was important because the chair was his only means of getting around, and having a suitable chair would have an impact on his continued recovery. Also, he wanted to make sure that it would meet his long-term needs—Max didn’t want to go through this process again for at least several years.
By the time he was ready to purchase his own chair, Max knew he wanted a fast chair with a small turning radius that would allow him access to most places. But Max was unaware of the specific model and other features he needed for his particular situation. He recalls receiving contradictory information from the rehab specialists and feeling that they were making decisions for him. He says, “I felt confusion. I was asking [questions] and I was getting confused answers.”
In order to identify his specific needs and make the right choice, Max finally took control by talking to other wheelchair users, observing other chairs, and eventually arranging with vendors to try out “a few possibilities” through trial periods with loaner chairs. Initially, this too was a frustrating experience, in that the time Max had to use some chairs was sometimes limited to just a few days or was cut short unexpectedly.
Eventually, Max was able to trial a particular model of chair for a sufficient period of time. In addition to the chair’s manoeuvrability indoors, he was concerned about using the chair outdoors. In order to make sure that he was able to manage curbs and sidewalks, he spent a lot of time outdoors. This trial period helped Max develop a “mental list” of the options and features he was looking for. In addition to speed and turning radius, the overall size of the chair was an important factor. Max wanted to avoid relying completely on the local paratransit system and so the chair had to be narrow enough to fit into the passenger side of their minivan, which they planned to use for day-to-day travelling as well as trips to Florida.
Once clear on the model of chair and the specific features he required, Max and Helen shopped around and “checked out” several vendors, comparing prices. He also wanted to secure a deal where head controls would be replaced by hand controls at no extra charge, when he was able to use them. Max finally chose a vendor, but feels he “wasn’t necessarily liked for that choice.” Throughout the selection process, he and Helen got the impression that they were being “pushed” toward certain vendors by the professionals at the rehab centre. They both felt uncomfortable with this and didn’t understand what kind of relationship there was between the vendors and the rehab centre. Max and Helen say that no one took the time to help them understand the “system” and, in their experience, the rehab professionals “didn’t paint the whole picture.” Feeling confused, vulnerable and frustrated, Max and Helen decided to focus on having their needs met by cutting through the “politics” and going directly to the vendor.
Max believes that it was very important to find an experienced, reliable vendor. His advice to those who are newly injured and making decisions about wheelchairs is to understand their functional level and to find the chair that is right for them, even if it means going outside of the established “system.”
Early in his rehab, Max was introduced to the computer. He had never used one before and had never really been interested in the technology. In spite of his ambivalence, however, Max recalls that being on the computer at the rehab centre gave him a sense of accomplishment. Max says it felt, “Great. Because it got me to move my hands for another reason, a fun reason, plus it got my mind working other than just thoughts … I [was] bored.”
Due to the limited use of his hands at the time, Max accessed the computer with a mouse that he operated with head movements, similar to the way he operated his initial power chair. Instead of feeling self-conscious about the way this apparatus made him look, Max says, “I didn’t care, the fact was I was doing it.” To his surprise, he found himself spending extra time on the computer when he had nothing to do. “I couldn’t stand just sitting. So this was benefiting me very much.”
When he left the rehab centre, Max was able to use a head mouse and a visual keyboard. Like many of the assistive devices he owns, he uses the computer mainly as a form of exercise; in fact, he uses the regular mouse now to play games in order to keep his hands active.
Max learned about van modifications through a vendor who came to speak at the peer support group at the rehab centre. Both he and Helen were pleased to learn that there were options beyond the paratransit system. A van would also mean that they could still travel to their favourite vacation spot. Helen contacted the vendor and arranged for several vehicles to be demonstrated. She says, “We wanted a sense of independence and thinking of going to Florida, we wanted our own means of transportation. So the vendor came out two or three times … with two different models.”
Because Max’s new chair had not yet arrived and proper dimensions were critical in making decisions around van modifications, Max arranged to borrow the model of chair he had purchased. Through ongoing consultations with the vendor regarding his specific needs as a passenger, they agreed to the following modifications: a lowered floor and an “eyebrow” to accommodate Max’s height when entering and exiting the vehicle; an automatic lock down system to restrain his chair with manual restraints as a back-up; an automated suspension ramp; and carpeting rather than rubber flooring. These modifications required extensive changes to both the interior and the body of the vehicle.
Considering the cost of these modifications, Max and Helen decided to purchase a new minivan instead of converting the one they already owned. They liked their model and were happy to learn that it could accommodate their choices in adaptations. So, they purchased a new van of the same model. In order to be modified, their new van had to be sent to another city for what was supposed to be four to six weeks. They arranged for a trade-in and were able to make arrangements with the dealership to keep their van for Helen to use during this time. However, the modifications to their new van took a lot longer to complete and the dealership wanted their old vehicle. This was a particularly “stressful” time and Helen dealt with the situation by repeatedly calling the vendor who was modifying their van. She says, “I’m sure they got sick and tired of hearing my voice…. I just kept phoning and bugging [them], hoping they’d get sick of me asking and do it.” In spite of Helen’s continued efforts to hasten the process, the dealership eventually took possession of their van. Until they got their new van back, Max and Helen were forced to rent a vehicle and rely on the local paratransit system. Eventually, Max and Helen got their newly converted van and say, “It was like finally now, we could just go at our own times. It was a great relief, and wonderful to have it.”
Preparing for Max’s release from the rehab centre was also “a very stressful time” for Max and Helen. They were simultaneously dealing with the matter of selecting a wheelchair, co-ordinating van modifications, and now had to face the issue of the accessibility of their home as well. Because he was newly injured, Max’s physical functioning and accessibility needs were still changing, and so these decisions were very difficult to make. Eventually, they decided to sell their three-storey home, and buy and renovate a bungalow using their own funds.
Inexperienced and pressed for time, Max and Helen had some ideas about the modifications they wanted for their new home, but they weren’t really sure. Through the rehab centre, Max learned of a contractor and arranged to meet with him. They told him what they wanted and the contractor drew up the plans.
In retrospect, they agree that they would do things differently today. First, Max says that it would have been helpful for them to visualize the renovations by reviewing the plans with the contractor at their new house. As well, while he believes that monitoring the renovation process enabled them to “catch” an oversight regarding the width of a door, he feels that they should have been more actively involved while the work was being done.
The renovations included converting two bathrooms into one large bathroom. The new bathroom features a lowered counter and mirror so that Max can use the sink independently.
To get in and out of the house, Max uses a powered lift. This lift allows him access to the entire house including the main floor, garage and walkout basement, which leads to the backyard. Max is not yet physically able to use the lift independently and requires Helen’s assistance. To operate the lift, Max would have to raise his hand, push a button, and keep his finger on it until he reached the desired level.
Initially, Helen would ride in the lift with Max. However, after they got stuck in the lift a couple of times, Max and Helen decided that he would ride in it alone while Helen operated it from the control box on whichever floor she happened to be. That way, she would be able to call for assistance in the event of a problem.
Around the time he became involved with meditation, Max also began having acupuncture treatments at the rehab centre. He believes that both interventions, along with continued physical therapy, helped him “take off” physically. Max believes that these therapies helped him to begin using hand controls on his power wheelchair and to improve the functioning in his legs and feet. In fact, he is now able to stand on his own and walk with the support of a pull bar walker and the help of one person.
Max first began to use a walker during outpatient physical therapy following his discharge from the rehab centre. There were several models available, but Max responded best to one in particular. He decided to get one of his own in order to continue his therapy at home. Because of the funding system in his area, Max was restricted to one vendor and this supplier did not sell the model he was looking for. Frustrated, Max and Helen worked with the physical therapist and found a vendor who did. They were able to purchase a used one at half the cost.
For Max, the walker is an important part of his recovery and, in his words, it is a “means of my being able to walk … it’s my next step to security and actually walking again…. And it allows my upper and lower portion of the body to function at the same time.”
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Max and Helen recall how vulnerable and alone they felt in the initial months following Max’s injury. They say, “You’re at a very tough time … a very stressful time. You’re fighting with yourself and not feeling the best, frustrated. You’re supposed to get answers and you’re not sure what you’re going to ask. And you’re trusting a lot in these people to damn well come through.” In their experience, many didn’t come through and so Max and Helen sought to meet their needs on their own by looking to themselves, turning to their peers for advice, and going directly to the source.
In spite of some mistakes and a lot of frustration, Max and Helen feel they’ve come out on top. Helen says, “I think we got smarter and more bold…. We’re asking more questions and we know there is a source—ourselves.”
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