15

Miraculous Adaptations

How to Take Advantage of Life-Enhancing Devices, Tools, and More

WHen I Was Injured in 2009, there were very few adaptive devices for people with ANI to use a computer. But when the first iPad was released in 2010, it was transformative. Suddenly, with only limited use of my fingers and the voice dictation feature, I could read and write, just like I had with my computer before the accident.

Today, smartphones, tablets, and watches can open up the world for you at a very reasonable cost. They can help you interact with social networks, obtain information, read books, play games, and so much more. With smart home software, you can control your lights, security system, doors, heat and air-conditioning, entertainment system, and even your coffee maker. Even if your disability is medically complex, you can use these applications with voice recognition (usually standard) or head tracking and eye gaze technology (specialized and expensive) to control your environment, to assist you in your work (and play), and monitor your health.

There are many excellent devices that can have a tremendously positive impact on your quality of life. These include aids for every aspect of daily living: personal hygiene, dressing, eating, and transferring from your bed to your wheelchair, from your wheelchair to your car, and so on. There are tools to help you with communication: speaking, hearing, and seeing. And devices that help you walk: braces, walkers, and exoskeletons. There’s a huge variety of wheelchairs and other mobility devices from which to choose that are designed for a variety of activities, including sports. There are even driverless cars (sort of!). Many of these adaptive devices and aids incorporate assistive technology (AT), which can be used to modify existing devices or to create new ones that enhance your safety and quality of life. You, your loved ones, and your health care team should work together to decide which devices would best suit your needs. Frequently, representatives from the companies that manufacture, sell, and service the devices can participate in the discussion; their expertise can be especially helpful. Whenever possible, ask for trial periods of high-ticket items. See information on these companies in the Resources section on page 283.

You or your caretaker should keep a notebook to help you compare the devices you’re interested in. Among the important choices are mobility devices (wheelchairs, walkers, and scooters); walking-assistive devices (canes and crutches); beds and seat cushions; aids for daily living (reachers, handles, and grips); communication devices and sensory aids (hearing aids, talking boards, and Braille displays); adaptive computer equipment (ergonomic keyboards, hands-free mice, and screen readers); and wearable tracking devices for health and exercise (to monitor your heart rate, number of steps walked, and calories expended). Ask your therapist if you can demo expensive items for a week. Many rehabilitation centers have donated chairs and beds that you can test.

Simple Devices Can Make a Huge Difference

Early on in my rehabilitation, paralysis had so weakened my hands that I couldn’t turn the pages of the paperbacks that friends had brought me. I was unable even to grasp a tissue and move it from right to left on my tray table when Patty, my physical therapist, instructed me to do so. I cried tears of despair and rage. Day after day in therapy, I very slowly strengthened my grip as I followed her instructions. Several months after she had started me on the hand exercises, Patty returned with a pencil and a book. She opened the book and laid it flat before me; holding the pencil with the eraser facing outward, she used it to grab the edge of a page and turn it over. Then, she handed the pencil to me. I grasped it with all my strength and finally turned a page. “I have my life back,” I said, with tears overflowing, and we cried together. The pencil was one of many simple devices that I used in the beginning. Others included a grabber to reach objects outside of my range of motion; universal cuffs for handheld items; special forks, knives, and spoons with rings to make them easier to hold (see page 215); and a special cup for drinking that was covered with Dycem, an antibacterial, tacky material to make it easier to hold, and had a no-spill cap that kept it from pouring its contents out when I knocked it over.

In the future, there will be even more miraculous tools to choose from, some of which will be commercially available and others as part of clinical trials. Brain-computer interfaces (BCI), artificial vision, augmented speaking and hearing, and improved exoskeletons are all being tested in clinical trials. The brain-computer interface is the ultimate device. It allows a computer to “decode” your thoughts and translate them into an action via a robot, an exoskeleton, or your own limb, stimulated by implanted electrodes. Other assistive technologies include epidural electrical stimulation, robotics, and virtual reality (you’ll find more about those technologies in chapter 19).

For all adaptive devices, it’s critical that you have the necessary information to ask the right questions so that you can choose the correct device, with the proper modifications, for you. Talk with your health care team, particularly the rehab folks, the sales representatives for the devices, and fellow ANI survivors who have years of experience with specific devices. They will be a tremendous source of information for you.

Despite the advances in technology, one thing is as true today as it was at the time of my accident. The two most important adaptive devices are your bed and your wheelchair, if you’ll be using one. Why? These two devices are where you’ll spend up to 95 percent of your time, at least initially. So they must be the most functional, comfortable, safe, and personally appealing devices that you own.

Beds

Choosing the right bed is extremely important, because you will spend at least seven or eight hours in it every night. During that time, your body needs to recover from the rigors of the day. It’s critical that the bed be comfortable and enable adequate blood flow to your skin and tissues, so that you do not develop pressure ulcers (see page 173). Many people choose to rent a hospital bed because it is an inexpensive choice (you can rent them by the month), and you can use the bed controller to change the height of your upper and lower body to find a comfortable position to sleep, eat meals, read, and watch television. One downside, however, is that the mattress material of hospital beds is firm and provides no redistribution of weight, which is essential to relieve pressure on your skin and tissues. As a result, you will be susceptible to pressure ulcers and must turn over every two to four hours to prevent them. If you’re strong enough, you might be able to do this alone or use an overhead trapeze bar to help you turn. If you’re unable to turn independently, you have three choices: have a companion or aide turn you; purchase a bed that can roll you over; or purchase a bed with excellent pressure relief, so that you can stay in one position all night.

The performance characteristics of beds may be widely different depending on the materials and assembly. Different mattress materials offer varying degrees of pressure relief and therefore different degrees of protection from pressure ulcers. Softer beds make transfers more difficult, but firmer beds may be more prone to causing high pressure on areas of the skin. When you are lying on your side, you are at risk of developing pressure ulcers in the tissue around the hip bones; when you are lying on your back, the risk of pressure ulcers is highest in the sacrum and heels. When you are lying on your back, keep the bed at a 30-degree elevation of the upper body to decrease pressure over bony prominences. Lying on your stomach distributes your weight naturally, but many people cannot tolerate this position. Pillows can be used to help to maintain your desired position and are particularly useful when lying on your side, where they can be placed between your knees to prevent your knees and ankles from touching each other and creating a high-pressure area.

There are five major types of mattress materials:

1. A regular mattress (e.g., a hospital bed) offers no significant benefits regarding pressure ulcer risk, and you must turn every two to four hours to relieve pressure on your skin and deep tissue.

2. Foam beds increase the support area and provide pressure reduction at a low cost, but the foam breaks down easily and will compress, making it less effective over time, so it must be replaced frequently.

3. Static flotation is usually the best combination for protection from pressure ulcers at a relatively low cost. The major types are “egg-crate” pressure mats, such as the ROHO cushion, in which groups of egg-shaped bubbles—usually 4 to 6 inches (10–15 cm) long by 12 to 16 inches (30–40 cm) wide—are assembled together to form a mattress. Each group of bubbles can be individually adjusted with more or less air to optimize pressure relief. I and many of my friends have found that the Sleep Number bed is a terrific static floatation device. You can adjust the pressure of the mattress over a wide range of settings, and it has the elevation capabilities of a hospital bed and independent control of leg and torso positions. With the king-size bed, you and your sleeping partner can select individual pressure levels.

4. The highest level of support surface uses air flow to float your body without pressure points. These air flow beds are usually needed only when you are treating a pressure ulcer, because the air flow in the mattress feels cold, the pump for air movement is noisy, and they are expensive.

The type of sheets you use is important; heavy sheets (flannel and thick cotton) create shearing forces when you move, and they don’t breathe as well as lighter sheets, making you hotter and increasing the risk of pressure ulcers. Bamboo sheets are the best choice because they allow your body to breathe easier and stay cooler.

Pillows need to maintain a level of support that prevents your head from tilting backward, which can occur spontaneously when you enter rapid eye movement (REM) sleep. If your pillow is too soft, you will put too much pressure on your neck, decreasing the area of your spinal canal and pinching your spinal cord, which may cause neuropathic pain and other symptoms.

Wheelchairs

Wheelchairs are usually the most expensive, important, custom-fitted, and complex assistive device that you will purchase. They are the preferred means of locomotion for paraplegics with normal upper body strength but paralyzed legs; people with TBI and stroke who have paralysis severe enough that they don’t have the strength to walk long distances; or anyone with an ANI who has balance problems due to loss of sensation or damage to the cerebellum that makes them too unsteady to walk.

The thought of spending any time in a wheelchair can be depressing, so let me share these words from the United Spinal Association: People are not confined to their wheelchairs—they are in fact liberated by their wheels. For me, getting a wheelchair was liberating. Prior to having my own electric power chair, I felt like a potted plant. I could only move when someone pushed the wheelchair that I was placed in because my arms were too weak to push the wheels. While I worked intensively to be able to walk on my own, I realized after twelve weeks that it was unsafe, painful, and not practical, because I was so slow. Having an electric wheelchair was not a sign of disability but, rather, an opportunity to move by myself and go where I wanted to go.

Type of Wheelchair	Advantages	Disadvantqges
Manual Wheelchairs	• Lightweight • Greater reliability • Easier to transport • Less expensive • Provides exercise • Easier to overcome accessibility problems	Self-Propulsion: • Possible secondary complications after long-term use such as sore shoulders, wrists, and elbows • Requires physical effort to be mobile
Scooter Wheelchairs	• Aesthetics—does not look like a wheelchair. • Increases mobility range without increased exertion • Swivel seat may allow • for easier transfers in and out of the seat	• More complicated to transport in a car than a manual chair • Needs charging • Less flexible modifications to meet changing physical conditions than a power chair
Power Wheelchairs	• Greatest mobility range with least exertion • Easier to modify over time, if needed • Available power seating options (i.e., tilt and/or recline)	• More expensive • More difficult to transport • Less reliable than manual wheelchairs.

Table 3: Wheelchair comparisons

Choosing the right wheelchair (Table 3): Your health care team will be closely involved when it’s time for you to choose a wheelchair, but being aware of the major issues will help you figure out what you need to address before you get into the specifics of choosing one. Depending on which wheelchair you choose, you may have to buy a new car or van to accommodate it. You’ll need to ask:

• Who will you purchase it from, and how qualified and responsive is the company’s repair staff?

• What is the reliability of your wheelchair and its brand, and how available are parts?

• How much will it cost? How much of the cost will your insurance company cover?

• How easy is it to push or drive?

Manual wheelchairs: Manual wheelchairs are designed to allow you to propel yourself or to allow a companion to push the chair for you. Self-propelled manual wheelchairs are equipped with large wheels; the rider self-propels using both arms to push the hand rims, and in some situations, both legs, or one arm and one leg. Self-propelled folding chairs are the most common design, because they are lightweight, easy to transport in a car, and often small enough to fit in the overhead bin of an airplane. A disadvantage of these chairs is that most do not have a cushion for pressure relief. You must raise yourself off the chair every few minutes to avoid pressure ulcers. This constant lifting can be hard on the shoulders and contribute to shoulder problems over time.

You may choose to add suspension systems to your chair, which smooths the ride considerably. The cost for better ride quality is the weight of the chair (the shock absorbers add a few pounds) and price (it’s higher). There are self-propelled chairs that use a lever to push the wheels, which may be more ergonomic than the standard hand-rim push chairs. The most recent advance is the power-assisted self-propelled wheelchair. There are two types:

1. Power-assisted wheels. These wheelchairs are equipped with a larger wheel in which the hub has a battery and motor that increases the efficiency of manual propulsion while reducing the effort that the rider must exert on the wheels. These hybrid wheelchairs are more easily transported than electric power chairs because they weigh much less (40 to 75 pounds versus 200 to 400 pounds), and the wheels can be easily removed so it can be placed into a car trunk. The only downside is that the chairs are expensive ($5,000 to $8,000).

2. Models in which a small third wheel, which contains an electric motor, is attached to the frame and propels the wheelchair, while you are using the rim to push (Figure 30). The advantage over power-assisted chairs is primarily in weight and flexibility, since the third wheel can easily be added or detached.

Figure 30. Attached motor assisted manual wheelchair

If you have impaired triceps function or any kind of shoulder problem, power-assisted chairs increase the distance and speed you can travel. Most important, they dramatically decrease damage to the shoulder’s rotator cuff. Future advances in battery technology should improve performance, decrease weight, and lower costs.

Scooters: Scooters provide power mobility and have the advantage of not looking like a wheelchair. If you’re feeling self-conscious about using a wheelchair or are limited by your endurance, a scooter may be right for you. If you’ve experienced difficulty walking, a scooter enables you to move faster and cover greater distances. Scooters are also relatively low in cost, lightweight, easily transported, and easy to get on and off, because the chair swivels. There are, however, a number of disadvantages that include a long turning radius, lack of stability on uneven surfaces (such as outdoors), and no ability to change seating options or cushions. They also require good upper body control, including arm and hand strength. If your physical performance declines, you may not be able to use a scooter because they have few functional adjustments.

Power electric wheelchairs: The most expensive and complex type of wheelchair has two major components: the power base (which contains the motors, wheels, batteries, and control module) and the seating component. The most obvious difference in power bases is the position of the drive wheel. Power wheelchair manufacturers offer three types of “drives”: rear-wheel, mid-wheel, and front-wheel drive. The placement of the drive wheel has a significant impact on how the chair moves. Each method has its advantages and disadvantages in both indoor and outdoor driving conditions. Once you drive a power chair, you’ll know which drive position is best for you, because it will require the least effort to go in a straight line and be the easiest to maneuver. It’s also important to consider the battery. Choose a chair with gel or dry-cell batteries as opposed to liquid ones, which can spill corrosive lead acid. Gel and dry-cell batteries are lighter, maintenance-free, and approved for airline travel.

The seat consists of two components: 1) the seat cushion, and 2) a motor that enables multiple positions for the footrests and the backrests, as well as tilting the entire chair to optimize your comfort and posture, and provide pressure relief.

1. Seat cushions: To minimize the risk of pressure ulcers, you should consider special seat cushions. Similar to beds, there are several types of seat cushion material: foam, air, gel, and dynamic or hybrid. The right cushion should provide comfort, correct positioning, and prevent pressure ulcers. To choose a cushion that meets these requirements, ask your therapists and doctors for advice, then try out the cushion for twelve to eighteen hours to ensure that it’s comfortable for you. Different cushions will distribute your weight more or less effectively. To help you choose the right cushion, you will likely use force sensing array (FSA) pressure mapping, which measures the interface pressure, the force per unit area (mm-Hg per square inch) between the body and the cushion. This is done by placing a thin rubber mat containing hundreds of pressure sensors on top of your cushion. When you sit on the mat, a technician records the maximum FSA under bony parts of your body as you assume different positions in the chair. The goal is to maintain peak FSA below 20mm-Hg per inch.

Among cushion materials, foam is the least expensive, is lightweight, and doesn’t leak or lose air. It’s not very durable, though, and does not provide pressure relief as effectively as other materials. Air cushions, such as the ROHO model, look like egg cartons with large black eggs arranged in rows, usually four to six rows per panel. Each panel can be inflated to its own pressure, allowing you excellent pressure relief (better than foam). They are also lightweight and allow the cushion to be adjusted to provide the best pressure relief for you individually. But they can leak (you need to check the inflation frequently), and they require adjustment when you change altitude. Gel cushions provide pressure relief and shear control equivalent to air cushions. Gel cushions weigh more, but you won’t need to check their air pressure routinely, and they don’t leak. I chose the Jay-2 cushion, which is a low-viscosity gel cushion, because of its excellent shock absorption (bumps make my shoulders hurt), good support (my trunk control was poor), and good pressure relief. Dynamic cushions, such as the Aquila, use a pump that alternates pressure throughout the cushion over time. While the integrated pump is theoretically better than other systems, many people find it impractical because it’s expensive and noisy, requires batteries, and takes up space. For a list of available cushions and seating systems, check out the United Spinal Association Disability Products & Services Directory, which has the greatest variety and most up-to-date information on disability products for everyone with ANI (more in the Resources on page 283).

2. Power seating positions: More expensive chairs allow you to adjust the seating positions. You can position them to tilt, recline, and elevate; the footrests are adjustable, and these chairs even enable you to stand. Tilting and reclining can help with pressure relief. Reclining changes the angle of your back so that true pressure relief is minimal, although it may be comfortable for rest and sleep. Tilting transfers weight to your back and off the bones of your pelvis, providing excellent pressure relief. Elevation not only enables you to reach objects on higher shelves but allows you to speak face-to-face with people who are standing, which is particularly nice in social situations. It can be difficult to carry on a conversation in a large, noisy room when you’re seated two feet below everyone else, so being able to elevate the chair enhances your ability to have a conversation. It also makes it easier for people to see you and find you.

There are many important factors to keep in mind when choosing the chair itself, but it’s also important to evaluate the chair in the places where you spend the most time: your home, your community, and your workplace.

Home: How accessible is your home? How easy is it to navigate inside your home? What is the width of the chair; will it fit through your doorways? How easy are transfers from the chair to the bed or couch? Can you adjust the height of the chair so that you can use a transfer board to get in and out of bed? How well does it fit in your kitchen and under your kitchen table? How maneuverable is it around your furniture? Does it bunch up or rip your rugs or carpeting?

Community: How will you get around in your community? How easy is it to get the wheelchair in and out of your van or car? If you can afford a van and have a power chair, you can lock it down with straps anchored in the floor, or use a floor locking mechanism that holds on to a pin installed in your van. If you have a car, you’ll probably need to transfer from your wheelchair into the driver’s seat. Depending on your strength, you may need a transfer board to get from chair to seat. Then, you should put your manual wheelchair in a location that enables you to retrieve it easily. If you plan to use your chair as your primary way to get around in your community, what is the terrain in your neighborhood: hilly or flat? Are there sidewalks, and what condition are they in? If there aren’t any sidewalks, you will need emergency flashers to make yourself visible on the road, or you will have to find alternative routes. Are you planning to go out at night? If so, you will need headlights. Are you planning to go off-road onto trails, grass, or gravel? If so, you will need wider tires and more torque, as well as a more stable platform. What accessories will you need to function in your community? How will you carry your money and wallet, pills and water, phone and computer? You may consider using a backpack that attaches to the back of the chair, or a small bag that attaches under the front. Make sure your chair has places to attach these bags.

Work: How will you get to and into your workplace? Once inside, how will you get around? Will your desk accommodate your wheelchair? Will you need accessories for the chair during group meetings? Consider your workplace’s unique circumstances as you select a wheelchair. And be sure to meet with someone in the human resources department to review your new needs and how they can be addressed. The Americans with Disabilities Act (ADA) outlines the necessary steps that the employer must perform for a qualified disabled individual, though the accommodations must be reasonable and cannot impose excessive hardship on the employer.

Walking—adaptive devices

Orthoses and braces: Orthoses control, guide, and limit an extremity or joint to improve function necessary for walking, reaching and grasping, and other specific movements. They also may reduce weight-bearing to protect a paralyzed or weak muscle. A lower-limb orthosis can improve walking by controlling the range of motion, stabilizing joints to prevent injury and maintain proper limb orientation, and reducing pain by transferring weight from a weak to a strong muscle group. If your injury has caused damage to your lower leg function, you may use an ankle-foot orthosis (AFO) to support the ankle and allow the foot to clear the ground during the swing phase of walking. If you have a more serious injury, you may require a knee-ankle-foot orthosis (KAFO) that allows you to stabilize the knee and ankle. While it’s hard work, people using KAFOs, even those with no hip flexion, can take steps by swinging their legs while supported by forearm crutches.

Braces: Braces are used to provide additional support for a weakened joint or muscle. The most common is the knee brace, which reduces the risk of hyperextension and increases agility and strength of the knee. I use one for walking and riding my tricycle; it prevents my knee from wobbling, which can damage my knee joint and injure my thigh muscles (quadriceps sprain). The brace also decreases stress on the ligaments that maintain knee stability. Athletes, particularly football players, often use braces to prevent ligament tears, especially to the ACL and medial tendons.

Canes and walking sticks: You may need to use a cane if you have weakness on one side of your body. To support your weaker side, the cane is held in the hand of your stronger side as you walk. When selecting a cane, ensure it is the proper length for you; when your arm hangs by your side, the top of the cane should align with your wrist.

Walking sticks are useful if you have impaired balance due to damage to the parts of the brain that control your equilibrium and balance (e.g., the cerebellum, the motor and sensory portions of the cortex, and the vision center in the occipital lobe). Imbalance is usually due to loss of sensation, especially proprioception, the sense that tells your brain where your limbs are in space. Walking sticks usually contain a spring mechanism to help absorb shock, which is particularly useful when going downhill. You may find that you like to use walking sticks in both hands for ease of balance.

Crutches: If you need to use crutches to recover from injuries to your legs, you will have a choice of two basic types: those that sit under your arm or those that are cuffed to your forearm. Your therapy team will help you decide which style is best for you. Either way, a proper fit is critical, since ill-fitting crutches can cause blisters on your hands and underarms as well as nerve damage to the brachial plexus that travels through your armpit, which could cause you to stumble and fall.

Walkers: Walkers come in many designs based on their complexity and speed (Figure 31). Choose a walker based on your balance, leg and arm strength, and endurance.

• Standard walker: This has four nonskid, rubber-tipped legs that provide stability (Figure 31A). You must pick it up to move, which allows people with limited balance to walk over uneven surfaces.

• Front-wheeled walker: This design is good if you need some, but not constant, weight-bearing help. It has a hard plastic cup called a glide on the rear legs to enable you to stop and rest, and also provides more control while walking (Figure 31B). If you have weak triceps and shoulder muscles, you can raise the height so that you can rest your forearms on special arm pads. This is called a platform walker, which is what I use (Figure 32).

• Four-wheel walker: This type is best for people who don’t need to lean on the walker for balance. With four wheels, it has the advantage of being able to move faster than two-wheeled walkers, and it can be equipped with a brake (Figure 31C).

Figure 31. Walkers

Figure 32. Platform walker

• Rollator or rolling walker: These consist of a frame with four large wheels, handlebars, and a built-in seat, which allows you to stop and rest when needed (Figure 31D). They frequently have hand brakes to control speed. Rolling walkers are most commonly used for walking longer distances, and for activities such as grocery shopping and taking a walk. They can be customized to accommodate a bag or basket.

Preventing Falls

Falls are one of the most common reasons people are readmitted to the hospital. Usually, the fall is caused by an ANI-related symptom, such as poor vision, dizziness, weakness on one side, lack of sensation, spasticity, or poor balance; and an environmental hazard, such as a slippery floor, steep or poorly lighted stairs with insufficient handrails, and/or tight spaces. Add in a difficult movement like getting out of bed, and you have a recipe for a fall.

New Technologies: Exoskeletons and Exosuits

Exoskeletons: Exoskeletons are battery-powered mechanical leg braces that use small motors at the joints to assist in walking (Figure 29; page 186). The ReWalk Personal System (Figure 29A; page 186) combines a brace support for legs and abdomen, a computer-based control system, and motion sensors. Videos on the ReWalk website show paraplegics standing and walking independently, and very excited to be moving on their own. But exoskeletons are very expensive ($75,000 to $125,000), making them inaccessible to most people. They are also slow (allowing walking at the speed of 1 or 2 miles per hour versus 2 to 5 miles per hour in a manual or power chair), and require ten to twenty minutes to put on and take off. To use them, you must also have near-normal upper body strength and endurance. When you transition from a hospital setting to rehabilitation or home, use of an exoskeleton will require a well-trained and dedicated caregiver. For these reasons, I don’t believe that exoskeleton technology will replace the wheelchair anytime soon.

Exosuits: Exosuits are designed for stroke patients who have leg weakness greater than arm weakness on one side. The ReWalk device is called ReStore (Figure 29B; page 186). It consists of a powered ankle and foot device that helps you plant your foot and lift it up so that you can walk faster and more evenly.

Walking devices such as canes, crutches, and walkers provide balance and control to prevent falls. To assist you as you get out of bed and go from sitting to standing, you can use a handrail that has been securely inserted under your mattress or a more sophisticated bar, such as the ones found on hospital beds. To make it easier to get up from a chair, you can use an electric reclining chair that slowly pushes you forward.

The bathroom is a particularly dangerous place because of slippery floors and tight spaces. Handrails and grab bars in places where you need support are inexpensive solutions. If standing in the shower is difficult, you may need a shower seat that folds down from the wall or a shower chair that rolls into the shower. Going up and down stairs may be risky; you can have handrails and nonslip stair-tread coverings installed. If you are too weak to climb stairs, there are motorized seats that carry you up and down. Whatever your personal and environmental risks for fall, you should purchase a fall detection monitoring device and alarm. Older models require you to press a call button that activates a telephone call for emergency help. Newer models have an accelerometer and GPS that can automatically detect when and where you have fallen and send out that information immediately.

Sports

You will probably be surprised to learn how many sports can be played with adaptive devices. Let’s start with wheelchair sports. These include basketball, billiards, bowling, golf, rugby, tennis, and wheelchair racing. For me, the most exciting adaptive sport to watch is racing because it has been the sport where the most unique and sophisticated adaptations have occurred. The racing wheelchair has three wheels: a small one in front and two large ones, as on a normal wheelchair, where the person sits. The adaptations include wind-tunnel aerodynamic designs and use of carbon fiber frames and solid disc wheels. The official marathon world record is 1:20:14 (forty minutes faster than the running marathon record!). An important concept is that you can take a piece of sporting equipment for nondisabled people and adapt it to your own specific needs. Some examples are cycling, horseback riding, and skiing (water and snow). I use a recumbent tricycle (Figure 33) that has pedals in the front, which allows me to see my legs moving so that I can keep them straight; because I cannot feel them, I wouldn’t know if I was pedaling properly otherwise. In addition, I had the controls for the brakes and gears shifted to my left hand, because I could not use them with my weak right hand.

Standing frames

Standing has many physical benefits: It helps prevent pressure ulcers, improves circulation, increases range of motion, and reduces spasms and contractions. Studies have shown that people who stand for thirty minutes or more each day have a better quality of life, fewer pressure ulcers and bladder infections, increased bone density, and better bowel function than those who don’t stand at all. To increase your standing time, you may want to acquire a standing frame (Figure 22; page 150). My physiatrist recommended that I get one to maintain bone density in my hips and legs. If you have difficulty standing independently for more than thirty minutes at a time, you may benefit from a standing frame. It’s best to stand every day, starting with five minutes and working up to sixty minutes. I use mine every day, and I’ve noticed improvements in my circulation and gastrointestinal health. Your health care team will guide you on how and when you should use a standing frame.

Figure 33. Three-wheeled recumbent tricycle

Aids for Daily Living

Bathing: After ANI, there are important reasons for daily showers beyond getting clean. Showers provide opportunities for a thorough skin check (ask your partner or aide to check the parts of your body you can’t see). Look for abrasions, cuts, bruises, or developing pressure ulcers, and be sure to deal with them immediately, if found. If you have paralysis or weakened limbs, you may find showers to be easier than baths, because getting out of a bathtub can be a risky maneuver.

Your ability to bathe yourself is determined largely by the range of motion of your arms and dexterity of your hands. If you have limited use of your arms, you’ll need a shower chair and assistance taking a shower. Even if you can transfer to a shower seat yourself or stand in the shower by holding on to grab bars, it’s still helpful to have someone nearby in case you need help. If you are able, you may want to consider building a roll-in shower, which makes entering and exiting the shower easier and safer—with or without a wheelchair—and eliminates a trip hazard.

Toileting: Having a bowel movement poses significant logistical problems for many people. If you have decreased mobility, especially decreased standing and walking, you’re at risk for constipation. The motility of your bowels that is necessary to propel stool is decreased in people with dysfunction of the autonomic nervous system, which is common in SCI above T6, and in stroke and TBI patients with brain damage (especially to the insular cortex).

You’ll likely need several adaptive devices for the bathroom, including a shower commode-chair that fits over the 14-inch (35 cm) standard-height toilet with more than 4 inches (10 cm) of room between the seat and the toilet rim. This allows you to reach your anus to perform digital stimulation (using your finger to push against your anus and rectum, causing a reflex action of your colon muscles and pushing the stool out), if necessary. You’ll also need a flushing mechanism that is easy to reach and activate, a suppository inserter, and a digital stimulation device if you cannot reach your anus with your fingers.

Grooming and hygiene: Grooming requires adaptation of existing devices. After my injury, I switched from a razor blade to an electric razor for shaving, purchased a hairbrush with an extra-long handle, and bought an ultrasonic toothbrush so that I don’t need to move my hand to brush my teeth. I also increased the size of the ultrasonic toothbrush handle by wrapping it with Dycem Non-Slip material, to make it sticky and easy to hold. To floss my teeth, I switched from the usual string to portable hand-held flossers called Plackers. There are many other grooming tasks that may require assistance if you don’t have good hand and arm function (e.g., makeup; shaving armpits and legs; washing, drying, and styling hair).

Clothing: You may have to alter your wardrobe to match your abilities and avoid your limitations. The two major obstacles to dressing yourself are zippers and buttons. The solutions are Velcro and self-threading zippers that snap together with magnets. You can also find clothing online that’s tailored for people with paralysis. It’s frequently called accessible and inclusive fashion (see the Resources on page 283). If you have a good local tailor, it may be less expensive to have them modify your current clothing. For example, I had an extra-long overcoat altered into a cape. The cape has a back that is cut open halfway up so that it doesn’t bunch when I sit down in the wheelchair; I also had the side panels removed but kept the pockets, and I had a slit made to put my arms through. A zipper with a big ring replaced the buttons, and the buttons were reattached with Velcro backing, so that the right and left sides stay buttoned over the zipper. The cape is easy to put on and take off, comfortable to wear, and covers my legs, providing extra warmth and protection.

Shoes: Velcro closures make it easy to put on and take off your shoes, and a low back makes a shoe easy to step into. Soft materials on the shoe itself, such as cotton, wool, or flexible leather (which can be found in lightweight shoes and sneakers), can help prevent pressure ulcers. The sole should not be leather, which can be slippery, but rather a synthetic material that provides better traction for transfers and repositioning if you use a wheelchair.

Eating: Eating independently is an important part of building self-esteem and increasing quality of life after your injury. But frequently, the strength, range of motion, and fine-motor control you need to use standard utensils is lacking. Fortunately, there are excellent assistive devices for eating. If you have sufficient biceps and deltoid strength, you may be able to use a mobile arm support (MAS) or balanced forearm orthosis (BFO) to help with eating, grooming, and hygiene (Figure 34). As you regain strength and endurance, you may not need to continue using the MAS. If you’re too weak or unsteady to hold a glass, you might need a straw to drink from a cup. A next step would be to use a water bottle with a straw that goes to the bottom so you can drink without having to turn the bottle upside down.

Figure 34. Balanced forearm orthosis (BFO)

If you have limited hand and finger strength, a common adaptive device for eating is the universal cuff, which accepts many utensils with handles (Figure 35). You also may choose to use Dycem (to help hold your dishes in place) and a plate guard (to prevent you from pushing your food off the plate). For many months, I used a fork with a universal cuff and then a Dining with Dignity fork (Figure 36) to push my food against the plate guard to get it to stay on the fork. These were very helpful for developing the ability to feed myself independently.

Figure 35. Universal cuffs for handheld items

Figure 36. Dining with Dignity fork

Holding and carrying: If you have weak arms or limited hand function, you may have trouble holding things like books, phones, and tablets. One of my favorite solutions is the gooseneck tablet holder, which can be mounted to any flat surface, including your chair, bed, or desk. One of the difficulties of living in a wheelchair is that it’s hard to carry things with you, since you need your hands to push the wheel rims or drive your electric power chair. Fortunately, there are lots of solutions for carrying items, such as a backpack. The advantage of a backpack is that the storage volume is quite large and can be well organized, but since it’s placed on the back of your chair, you may not be able to reach it easily. If you use a manual wheelchair, you can use a small bag attached under the seat to hold a few items, such as your wallet, phone, and snacks. I like using a tray that rests on my knees because I can see my items—phone, tablet, papers, and books—in front of me. It’s also a good surface for eating; I put Dycem on the tray or rubber coasters to hold a plate and cup.

Transfer devices: Most people with paralysis develop the ability to perform a sit-pivot transfer or use a transfer board. If you have strong arms, you can use them to push yourself up and over. If you have strong legs, you can do a sit-to-stand quadriceps push and then sideways rotation. If you’re too weak to do a sit-pivot transfer, there are several types of devices you can use to transfer between surfaces of similar heights (e.g., bed to chair), and surfaces of different heights (e.g., chair to exam table). Many people use a sliding or transfer board (slick wood or plastic) to facilitate transfers, but these can only help when the surfaces are of similar heights, or the surface you’re transferring to is lower. But be aware that sliding causes more shear force on your pelvis than a sit-pivot transfer and therefore predisposes you to pressure ulcers. You can reduce the shear force by making sure the surface of the board has very little friction, and by wearing slick pants, such as those made from polyester or acrylic material (blue jeans are the absolute worst for transfering!). If you don’t have enough core strength to safely perform a sit-pivot or sliding-board transfer, you can use a mechanical lift, such as the Hoyer lift (Figure 37). A comfortable sling is placed under your bottom and is then attached securely to an arm that extends to move you in the desired direction.

Figure 37. Hoyer lift

Wearables: These small devices (including smart watches) that are worn on your body can measure calories expended by monitoring heart rate and activity (number of steps, distance traveled by walking or in a manual wheelchair). It’s important to understand your energy expenditure so you can maintain the right level of exercise. Newer devices can measure your blood pressure, breathing rate, and blood oxygen levels, providing real-time information on your health.

How to Pay for Adaptive Devices and Assistive Technology

Your health insurance should pay for some or all of the assistive devices you need. But if it doesn’t, a great place to start looking for help is the Assistive Technology Industry Association, which offers a free Funding Resources Guide. They also provide helpful information on choosing devices.

Some of the other methods of funding include:

• school systems (if you are a student) that distribute specialized materials as well as assistive technology specified in an Individual Education Plan (IEP) or a 504 plan

• government programs (Social Security, Veterans Benefits Administration, or state Medicaid agencies) that pay for assistive technology if a doctor prescribes it as a medically necessary device

• private health insurance companies, which pay for assistive technology if a doctor prescribes it as a necessary medical or rehabilitative device

• rehabilitation and job-training programs, funded by government or private agencies, which may pay for assistive technology and employment training to help people get jobs

• employers that pay for assistive technology as a reasonable accommodation to enable an employee to perform essential job tasks

• private foundations, charities, and civic organizations (see the Resources section for a complete list)

Adaptive devices and assistive technology are expanding dramatically as the “Internet of Things” becomes more and more a part of daily life. Devices that control your environment, your security, and your food preparation are already transforming your home, and will continue to do so.

Everything You Need to Know

Adaptive devices and assistive technology will greatly enhance your quality of life. Begin discussing and researching your options as soon after your injury as possible, while you are still in the hospital. Involve members of your household in the process. Keep a notebook with notes on device options, manufacturer brochures, prescriptions from your doctor, funding options, and so on.

As you progress in outpatient rehabilitation, your needs may change. Keep your physician informed so that if your health insurance company requires a prescription for a new device, one will be available.

Some assistive devices are inexpensive and for short-term use; others are expensive and meant to be useful for years. Be sure to investigate your options thoroughly so that you can make the choices that are best for you. Whenever possible, ask your rehabilitation program if you can try high-ticket items for a week. Many of them have donated chairs and beds that you can test.

Don’t let cost deter you from purchasing the best devices and AT for you; investigate the community, state, regional, and national organizations that exist to provide funds that help.