Toby combines the use of advanced technology, particularly his environmental control unit (ECU), with the help of family and friends to maximize his independence. Through a lot of research and hard work, Toby and his family built a home that might be considered one big piece of assistive technology. His house has many of the features that you expect to see in a home designed for wheelchair use, such as an elevator and lots of open space for turning. But the house is also set up to take full advantage of voice-activation technology: Toby can control most devices in his home through simple spoken commands. In fact, he has been told that his voice-activated elevator is the first in North America.
But for all this technology, Toby’s family is important to his independence too. They live in the same house with Toby in separate quarters and have a separate phone line, but they are “just five minutes away.” Toby explains, “I needed them to move with me, or else I would never have been able to be totally independent because of nursing hours. You don’t get enough.”
Toby and his family had to pull a lot of pieces together to build his new home. Though he feels fortunate that his injury was covered by a private automobile insurance, he notes, “You only have a certain amount of money … even if you have insurance. Even me, being as lucky as I am having insurance, it’s going to run out no matter what you do to try to save it. There’s no way that it will last a lifetime the way they have it set up now.”
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Toby’s first hurdle in building a modified home was to convince the rehab professionals that he would be able to live independently. He remembers the professionals telling him that he would have to go to a long-term care institution. “Everyone was saying, ‘Oh yeah, you’re going to have to go into a home, and it’s not even an option … to get a house because of the level of dependency.’ Even the insurance companies were saying that was my only option.” But Toby and his family would have none of it. “Almost from day one in rehab, me and my dad started looking into all the different options and really didn’t consider going into an [institution].”
When his various providers realized that Toby was not going to live his life in an institution, they advised him to move to a city “where they have the medical stuff in place.” But Toby and his family rejected that idea too. His father told them, “Toby’s got a great support group of friends … who’ve been behind him from day one.”
Then the insurance company decided they would pay to renovate Toby’s parent’s home so that he could live there. But Toby and his family did not think that was the best solution for them. With persistence and negotiation, Toby and the insurance company came up with a solution. The insurance company assessed how much it would cost to renovate Toby’s family home and gave them the same amount for building an accessible new house.
Toby and his family started researching how to build their new home. In particular, they spoke with others who had already been down the same road. Toby’s insurance adjuster has quadriplegia, and he had modified his own home, so he was a good source of information.
Toby is especially grateful for the help he received from an architect with paraplegia. The architect had renovated his own home, so was a huge help as he took Toby through the “hundreds and hundreds of floor plans” they looked at. He notes that this particular individual “wouldn’t take money” for his services. Toby says that he found such a knowledgeable person by the “luck of the draw” and wishes there were a better way to make sure people who need resources like this can get access to them.
The next step was to find the right contractor. They considered four construction companies’ bids before choosing one that was that was neither the cheapest nor the most expensive. Again research was important. “We actually went out and looked at their work, the different houses that they built and stuff like that. And then just through tips of people that had used them before, then we just picked the one that we thought would do the job best for us.” The result was, “They were excellent. They would do anything and everything for me. Like it took them a lot longer to do than maybe another big construction company who might have slapped it all together in a couple of months.”
Furthermore, the contractors didn’t mind having Toby and his family around during the construction. Toby was on the job site every day, and his father even videotaped some of the construction. He feels that’s how he could guarantee that the house would be suitable to his situation. He explains that a house with “no lips, no bumps” and special doors can be foreign to contractors. “Even if it’s right in front of their faces, they still don’t comprehend it, because they’ve never had to do it before.”
It took three years for Toby’s new home to come together. For the first three years after his injury, Toby lived out of one room in his parent’s home. It was a terrible experience. “I had to go to the bathroom in that room. I had to do my daily washing and grooming and teeth in that room. I watched TV in that room. I ate dinner in that room. I was just totally stranded in that room, and it was very bleak. Lots of depressing days, definitely.”
Toby is quick to point out, however, that he came out of that experience knowing exactly what he needed to be independent. He also gained the patience and persistence to make it happen. He says, “You realize very quickly the needs that you’re going to have in the future. Like needing room to turn.” But he also recognized some of his less obvious needs such as having his “nurses and my dad break their backs over and over again to try to get me in the chair and position me. Well, then I knew right from there that I was going to need a lift, because this isn’t going to work in the long run, because nurses aren’t going to be able to throw me around. So going through the worst of times actually was helpful in so many different ways.”
Toby points out that he considered other options for using his insurance money to look after himself. He could have bought or built a much smaller home and paid for more hours of nursing care. But he was aware of the shortage of nurses, especially where he lives, so he knew that would not be a very good option. He also says, “We could have thrown [the house] up a lot quicker, but we really, really planned it well and wanted to make sure everything was exact, so we didn’t have to say, ‘Oh darn it, we rushed it for this, and we forgot to put this there.’ So we really wanted to make sure that all my needs were taken care of in the new house.” As a result, Toby can say of his house, “ I couldn’t be more satisfied.”
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See Toby operate his voice-activated ECU. Choose a format: |
With his ECU, Toby can use his voice to control almost anything that is powered with electricity in his house. He can independently open doors, turn on and off lights and appliances, make telephone calls and use his elevator. The actual controller is a portable device that looks something like a Palm Pilot. During the day, this device is mounted on his chair, so he can give commands wherever he happens to be in the house. At night, it comes off the chair and mounts above his bed. The controller recognizes Toby’s spoken commands and relays them to the devices being controlled through wireless signals. Each device that Toby needs to control has its own set of commands.
The exterior doors to Toby’s house have door openers that he can control by voice with the same ECU. “If someone’s at my door, I’m able to go to the door, and I don’t need an assistant to open the door up to let someone in.” Soon, he will have cameras installed, so it won’t matter “where I am in the house, I’ll be able to see and communicate with the person at the door through an intercom system and camera. So I could be in my bedroom downstairs, and someone can ring the front door upstairs, and I’ll be able to see who it is. I’ll be able to let them in if I want. Or if it’s a stranger I can … not let them in, because the doors are automatically locked and through my voice-activated [system] I can unlock them, lock them and open them up.”
Toby is delighted with the telephones in his house because they are also under voice control through the ECU. He can answer, dial and hang up with voice commands. He describes how it works. “It’ll ring, and then through my voice commands, I run through a menu. And then I get the telephone, and it gives me options on what I can do once I get the telephone…. You can answer or you can dial numbers or you can get your stored numbers picked out and stuff like that.” He explains, “I have three phones throughout the house, so I can control any phone no matter where I am. If I’m upstairs and my phone’s ringing, I can just go over to the phone and say, ‘answer,’ and it answers.” And “no matter where I am [in the house], the closest one will pick up, so that’s sort of neat.”
He recalls that in his former living situation, he couldn’t even have a private phone conversation. “I would need someone to hold the phone there, so they would be listening to my conversations. And then they’d have to hang up the phone and stuff like that. So they knew everything I was talking about. And if I had a girlfriend or something like that, you’re not going to want to sit there and shoot the breeze.” His voice-activated phone doesn’t allow him complete privacy because it’s a speakerphone, but it is a huge improvement over his previous situation.
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The availability of a voice-activated ECU also helped Toby persuade his insurance company and an elevator company that it would be safe for him to operate an elevator by voice. Toby’s parents had to contact about 15 companies before they found one that was willing to try to make the situation work. Toby’s family heard repeatedly that there’s no such thing as a voice-activated elevator. Well, there is now, because Toby’s family found a local elevator company that took up the challenge. Toby’s father notes, “You’ve got to get somebody that’s not stuck in a paradigm that’s going to say we can’t do, we can’t do.” Toby’s elevator attracted the attention of the local newspaper that held a symposium about the house. Toby’s father recalls, “There were probably 25 elevator companies wanting to know how we did it.”
A voice-activated phone in the elevator is one of the “three or four safeguards” that he had to have installed before the insurance company and elevator company would agree to it. Toby explains that if the elevator “got jammed up, there’s a [voice-activated] phone in there that I can use to call 911.” There is also an “an eye beam” that stops the elevator automatically if Toby is too close to the door to make sure that the elevator won’t start moving if he gets his foot caught in the door. The elevator also has an alarm switch “that will ring bells throughout my house” to alert Toby’s parents if he needed help. Having two floors gives Toby a bit of privacy, because his family has separate quarters on the second floor of the house. “Privacy is a big issue for me,” he says. “Needing help all the time cuts down your privacy.”
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See Toby describe getting used to his voice-activated ECU. Choose a format: |
Until the user sets up and learns the menus, the system can also be operated through a sip and puff switch. Toby explains, “When you’re new at it, and you’re not sure of where your menus are going to, the sip and puff will take you through it.” But he adds, “It’s a lot easier to run through the voice.” The sip and puff system is also a back up if the voice activation system fails for some reason. Toby points out that the voice recognition system is actually quite sensitive. “Like if I have a cold, I’m not going to be able to use the voice, so … I can just start sipping and puffing instead of using my voice.”
Background noise can also disrupt the voice recognition system. Toby explains, “When I turn my stereo on, … if the volume’s up too loud, it’ll knock out the microphone. It won’t listen to me because the volume’s too loud. So then you just use the sip and puff to turn it down.” So far, Toby hasn’t had too many problems with it.
“[The system] is very efficient and may seem quite advanced to the onlooker, but in actuality once you understand the concept behind it and how it works you would see it is a very basic system. The program only has 64 command words, and you use a lot of the command words more than once. For instance if I am in my bedroom and I want to control my TV or any lights, etc., I would say ‘bedroom’ and then ‘TV’. On the other hand if I am in my living room and I want to control the TV in that room I would simply say ‘living room’ and then ‘TV’ so you can see how command words would repeat themselves like TV, lights, fan and so on.”
Toby says, “There’s not much that I can’t do right now with the technology I have. I thank my lucky stars for that.” But there are a couple of things. For example, Toby cannot control the temperature, which is an issue because he finds that since his injury, he is always cold. Toby is aware that there is “technology out there” that would allow him to control his windows and blinds as well. But that technology is simply too expensive at the moment. As lucky as he is to have insurance, Toby notes that the money is not limitless, so he had to make choices.
Toby has a special air-filled mattress “with a whole bunch of different baffles” that inflate and deflate back and forth for pressure relief. Although Toby is turned half way through the night, he is still in one position so long that there is a risk of skin breakdown without this special mattress. The head and foot of the bed can be raised through a control. Toby notes that he could have set up his ECU to control these features of the bed, but he didn’t feel he needed to. “Once I’m in a position where I am set up, I don’t really want to move from there anyway. But for people that have different needs—who are maybe able to sit up a little better and be able to move a bit in their bed— they might want that on there.”
Beside his bed, Toby has a six-foot ceiling track to help his attendants get him into his commode and wheelchair. He explains, “Because I have no weight-bearing, and I can’t move any muscle in my body, I need … a ceiling track lift that gets me into the chair. I have a sling that goes under me, and then the ceiling track lift hooks up to that and then that raises me up. Then you slide me over into the commode, and then it lowers me back down.” Because the bathroom is attached directly to his bedroom, Toby can get into his commode and into the bathroom without having to worry about covering up and travelling through other parts of the house.
He is very clear on the need for a wheel-in shower. For three years, Toby had no shower facilities. He had to get by with unsatisfying sponge baths. Now his shower is “a whole room,” five feet by six feet. “I get into my commode, and the commode goes right into the shower stall itself, and the nurses can get right in there with me.” He recalls when he moved into his new house: “The first few times I showered, I stayed in there for like an hour and a half. I think everyone likes the warm shower, but I suck it up as much as I can until the nurses are waterlogged and say, ‘Let’s get out of here.’”
Toby also uses a ceiling track downstairs that allows him to get into his hydrotherapy tub, which he uses four or five times a week. He finds hydrotherapy helps his circulation and his spasms. He explains, “Obviously I’m not moving at all, and I have very low blood pressure. So I have the hydrotherapy tub. It gets my blood pumping and it helps with my blood pressure. It raises it quite a bit for me. My normal blood pressure is 90 on 70. Well, when I get into the hot tub, it gets up to about 110 on 80 which is really good for someone like me.” He discovered these benefits during his rehab when he had to use the hydrotherapy facilities to heal a sacral ulcer he developed. “So through sort of bad luck, I ended up having really good luck by discovering a lot of these different things that go along with having a sore on your butt.”
Toby also has “lots of spasms,” but “once you get into the hot water and get the jets on you, it gets rid of all those. Like it’s just so relaxing. Because I don’t use my muscles, they get really tense as you know, and in order to loosen them and get them pliable again, I use the hydrotherapy tub.” Once again, Toby does not ignore the human touch: he also has three hours of massage therapy twice a week in order to keep his muscles limber and loose. Even though he had regular massage sessions in rehab the government refuses to pay for them, so the money is coming directly out of his pocket.
Then there are the simple adaptations. Like most people with spinal cord injuries, Toby has to pay special attention to his bladder to avoid infections. His father points out, “The more he drinks, the more his bladder works, the less infections he gets.” But someone had to get the water for Toby to drink until one of his friends, who does a lot of cycling, suggested that Toby use a water bottle designed for cycling. “He uses a backpack thing that holds water in it, and it’s got a little straw on it that drapes over his shoulder. And he thought that I could use it somehow to lay in my bed and position it, so I wouldn’t have to have someone come in fifty thousand times a day to give me a drink…. I also have one hooked up to my wheelchair.” Toby wonders why they don’t teach these simple solutions to people before they leave rehab.
In addition to looking after his bladder, circulation, muscles, lungs and skin, Toby has to worry about his bones. Toby’s physiotherapist at his rehab centre makes a lot of use of a tilt table for standing, so he started using it then. Then he bought one for home use. He knows that he already has osteoporosis, “So I get into the tilt table to put a weight on my muscles and bones to try to keep them strong and try to keep them so that I don’t get osteo everywhere throughout my body. So one day when they do have a cure for this, I’ll be able to function normally.” His physio also told him that standing would help his circulation.
Toby gets on the tilt table from his bed. He explains, “I slide into this tilt table which is like a stretcher. So I get onto the stretcher, and then it cranks me up, and it puts me into a standing position.” He tries to use the tilt table three times a week.
To get around his house, Toby uses a wheelchair he can control with a head control, which is essentially a joystick that is mounted on the headrest. He chooses a mode with a shoulder switch (e.g., forward or reverse), then he uses the headrest to drive. He explains, “I control the chair through pushing actually. It’s like a joystick on the back of the headrest. So I click through my shoulder to go through [menu] options, and then once I get to the option I want, I can run it through the headrest, which is sort of neat.”
Toby chose the head control instead of a sip and puff system because he had the mobility to use a head control, and he preferred the way it looked. “I didn’t want something in my face all the time…. As soon as I found out I can get it another way—just click the switch with my shoulder and then drive with my headrest—there was no way I was going to do the sip and puff.”
Toby can use his chair only four or five hours a day. Otherwise, he is vulnerable to skin breakdown and muscle soreness. His wheelchair has features to help prevent skin breakdown, such as a “four-hundred dollar cushion.” He also has a tilt function, which he uses a lot because “it does alleviate a lot of the pressure.” He notes that “those things do help,” but he thinks a recline function, which he doesn’t have, would be even more helpful. “The only thing I do is I tilt at 90 degrees, and my whole body tilts, but it doesn’t lay me down. If it laid me down, it would probably move the pressure off my butt.” He also has a human back-up system for pressure relief. “When I’m out with my friends, I get my buddies to just give my hip a little flip. That helps tons and it allows me to stay out longer. Like I don’t stick to four hours as a staple every day. But for the most part, it’s four hours.”
Ultimately though, “I just get too sore from not moving at all,” Toby says. “Not even just my butt. Like my back will get sore. My arm, because I’m not moving whatsoever. It’s no fun sitting up once you get sore after four hours.” Toby thinks he will always “have a time limit [for sitting], but eventually it will get up to about six, seven hours a day.”
Toby describes the long process of learning to breathe without a ventilator. “The bare minimum, I’m pretty sure, is 1.8 litres of air that you have to be able to generate by yourself by breathing in and out. At the beginning, to strengthen my diaphragm, I had a muscle trainer. All that it is, is you breathe in and out into a resistance valve. So you breathe in, it’s not going to give you any air unless you suck in hard, and then the spring opens. And then … [as] your muscle gets stronger, the harder you tighten the spring. I was on the muscle trainer for probably about eight or nine months and I had to … do all the different [lung function] tests.”
At first, Toby could be off the ventilator for very short periods. “So they’d pop me off the ventilator for two minutes at a time, and all my stats would be saying ‘Oh yeah, you’re okay,’ but in my mind I was like, ‘I need that ventilator, get me back on!’ So, after two minutes I’d be yelling and screaming, ‘Put me back on that ventilator!’ And then eventually months and months and months later, I finally got up to where I was like 15, 16 hours off the ventilator. Then I wouldn’t want to go back on the ventilator because it was like a timed breath. It would give your breath in times. Like it’s not as you breathe.”
To continue to be without a ventilator for extended periods, Toby has to practise “every single day” with a device called an amu-bag. He explains the process: “I do breath-stacking, where they fill my lungs up through like a balloon thing. They pump it up, and then they give me assisted cough by pushing on my chest. If I ever have to cough, or if I have a cold or something like that, and I need to clear my lungs, that’s how I would do it.” It’s a lot of work, but for Toby, it’s worth it, even though sometimes he feels he is penalized for his efforts. He explains that, because he doesn’t use a ventilator, he is not eligible for 24-hour nursing care. On the other hand, “no one wants to depend on a machine to survive.”
Toby starting asking about adapted computers while he was still in rehab. He remembers, “I was just starting to learn about computers before my accident, so I was still curious after my accident, and the occupational therapist mentioned that they had software that could be controlled by voice. As soon as she told me that, I just sort of went haywire,” and he got her to find out as much information as she could.
To operate his computer, Toby just uses off-the-shelf speech-recognition software. He found it was easy to learn, though a little time-consuming. “Because you have to train so many different words. I think there was like twenty thousand different command words. You have to say the word over five times each. So it’s really easy, but just really tedious work to train it. It’s like over and over and over again you’re just saying words…. But once you get through the training process, it keeps learning…. And it builds with your own vocabulary, which is really neat…. You just say, “spell mode,” and you spell the word. And you say, “train mode,” and then it allows you to say it three times and then it’s trained. So then every time you say that word, it knows that word…. So that’s really neat that it learns as you go.”
Toby’s computer has a regular keyboard so that someone else could use if necessary. He moves the cursor through voice commands in the software’s command mode: “Mouse up, mouse down, mouse right, mouse left…. It’s all just run through a little voice bar that’s on the computer…. There’s different modes in [the software]. You can go into dictate mode when you’re writing letters. So once you get into your body of your letter you say, “Dictate Mode.” And every word that you say, it writes down. But … [in command mode] it goes into all the different modes like mouse up, mouse down, button click, drag up, drag down.”
Toby uses his computer for email, to surf the web and to work with his photographs. He can make all of his medical appointments by email. With his photographs, he makes “postcards, greeting cards, Christmas cards with personal pictures on them, which is really neat. Like I take a picture of my house or with me in front of my van and stuff like that. And then I can put it on a postcard and then make my own cards.”
Toby is also looking into distance education courses that he can take on his computer. He wants to study computer programming. Toby expects to have to upgrade his speech-recognition software when he starts taking courses, but for now he is quite satisfied with what it can do and how easy it is to work. When he starts taking courses, he will also install a monitor in his bedroom, so that he can work from bed.
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Toby is passionate about the role of technology in the lives of people who have spinal cord injuries. “If the technology is out there, let’s get it in place, so people can perform their daily tasks…. Just being able to get into a bathroom that you can fit into is a big, huge change of quality of life. Because you can actually get a shower. You can actually go on the toilet in the bathroom instead of being in one room to have to do everything. Which is not acceptable in my books. That’s why I fought so hard to get the things that I have today. Because everyone deserves them. In my book, as a Canadian citizen, you deserve to be able to turn on a light if you want a light turned on. You deserve to be able to … go into a bathroom and … stuff like that.”
Toby is very concerned that, “The insurance companies … won’t tell you what you need … what you’re entitled to.” He is grateful that his family made the effort to do the research, read the legislation, write the letters and make the arguments that they did for him. “But the process of going through it is very stressful, tedious,” Toby argues. And no one should have to do it.
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