Life on Wheels (10 page)

This avenue of research can be applied easily in rehab, since it involves no pharmaceuticals or surgical intervention. The Food and Drug Administration does not have to approve it as a form of physical therapy, so treadmills and FES bikes are increasingly becoming standard equipment in therapy gyms across the US.

While in rehab, you are removed from your daily life in the outside world. You face considerable psychological adjustments, do hard physical work in the therapy gyms, and possibly live with pain. A little fun is an important element of successful rehab. Recreation will also be an important aspect of your life after rehab, so the recreation therapist will help you begin to identify—and maybe try—those options. And, like other forms of therapy, recreation therapy helps you develop and optimize your strength and skills.

A recreation therapist is a trained professional. Recreation therapists understand the physiology and psychology of your disability and what physical and cognitive capacities are necessary for a given sport or activity. By bringing that information together, recreation therapists help determine athletic options and are aware of adaptations that make a sport available to you, such as the mono-ski or sip-and-puff controls for target shooting. They will work with the occupational therapist and physical therapist to design supplemental activities that give you the chance to use the strength and skill you will develop in the therapy gym and once you’re back home.

There is a remarkable and expanding set of sports and recreation options that are increasingly open to wheelchair users, discussed in great detail in Chapter 8, Getting Out There. Choices include wheelchair basketball, quad rugby, snow skiing, kayaking, waterskiing, archery, billiards, Ping-Pong, tennis, shooting, and many other sports accessible to chair users, often by means of adaptive devices. Many sports are available to people with limited arm strength, including swimming, archery, bowling, camping, sailing, and even throwing a Frisbee, thanks to the Quad-Bee designed by Foster Anderson, a man with quadriplegia in northern California.

The recreation therapist will discuss what interests you and what you did before your disability and will then point you to organizations that sponsor events where you can observe activities that interest you. You could even set your sights on devoting yourself to an event enough to compete on a world-class level at the Paralympic Games.

Rancho Los Amigos uses sports as a way of finding out what interests people have. The center offers hockey and wheelchair basketball games, as described by Dr. Michael Scott:

Many rehab centers take you on field trips, organized and overseen by the recreation therapist. Therapists know the value of contact with the outside world, to help you through those early moments of feeling conspicuous as a wheelchair user and to give you a taste of an accessible recreational activity. The outing might just be a stroll around the block or going to a movie, but recreation therapists do their best to get a little fun into the experience.

HealthSouth Rehabilitation Hospital’s Uli Salas takes people to local wheelchair basketball games:

Outings show the recreation therapist your reactions to disability and help you learn how the world will react when you begin to appear in the world as a chair user. Dr. Scott explains:

How much exposure you’ll get to various options depends on the facility and the space and resources it is able to devote to recreation. Some smaller rehab hospitals will not have a space devoted to recreation. Your room might become the principle gathering place. Visitors will have to come to your room—usually shared with one to three others—and you might feel like there is nothing much more to do than be in bed. Recreation therapists in such settings will try hard not to let that happen, being as creative as they can by renting videos and setting up an evening “theater” in the therapy gym or throwing parties around a holiday. Their goal is to keep you active and, to the degree they can, give you a taste of available athletic options.

Oxygen is essential to all metabolic processes and to life. Breathing is particularly an issue for people with postpolio syndrome or high-level spinal cord conditions. The muscles that cause the lungs to expand and contract are often weakened by these conditions, limiting the amount of air you can draw in. People with higher level paraplegia can also face breathing difficulties from limited use of trunk and abdominal muscles and a reduced ability to cough and clear mucus.

The respiratory therapist’s job is to ensure that you are getting sufficient oxygen into your lungs. Respiratory therapists determine the efficiency of your breathing by measuring “vital capacity,” based on body size and age. Therapists can measure oxygen saturation in the capillaries of the ear or finger. They listen to your lungs with a stethoscope to judge air movement and the presence of secretions. If your oxygen saturation levels fall below a certain percentage, the therapist will take measures to improve your breathing.

Doubts about your ability to breathe are often a source of deep fears and insecurities. Respiratory therapists are acutely aware of the anxiety associated with breathing; part of their job is to reassure you. If you have respiratory issues, the respiratory therapist is one of the first people you will meet and one of the first to spend significant time with you.

Respiratory therapists will work with occupational and physical therapists to select activities that help strengthen muscles in the chest and diaphragm used in breathing. Respiratory therapists interact with other rehab team members, advising them how your respiratory status needs to be considered in the work they are doing on your behalf, instructing them about respiratory issues, and, in some cases, teaching basic methods, such as use of a resuscitation bag.

If your vital capacity is low, respiratory therapists might recommend a stretch program. A ventilator machine literally inflates your lungs to stretch them out—hyper-expanding them—to increase their capacity. Pressure is increased gradually, taking your comfort level into account. This is usually done for 10 to 15 minutes, four times per day.

In some cases, breathing needs to be assisted with a ventilator. Not all centers are equipped to work with ventilatordependent quadriplegics; this requires special skills and facilities. During initial rehab, the goal is always to work toward getting off the ventilator, which many people ultimately achieve with hard work.

One of the strongest images associated with the polio epidemic of the ’40s and ’50s was the iron lung. It was the assistive breathing device of the day, using negative pressure to create a vacuum that would cause the lungs to draw in air. Now the most common approach is positive-pressure ventilation, in which a machine delivers a measured volume of gas into the lungs. The machinery has become very advanced. There are a number of portable products that can be installed on a wheelchair. Many more people are familiar with this equipment thanks to the broad public exposure of Christopher Reeve. The machines are equipped with alarm systems that indicate either volume or pressure drops; the sensitivity can be adjusted. Machines even have the ability to simulate a sigh and to recreate the normal pattern of breathing as much as possible. Settings control respiratory rate, humidity, and pressure.

Assisted breathing settles into a routine part of life for those who rely on it, as this ventilator user notes:

Successful use of a ventilator depends on good training provided by a respiratory therapist, not only for yourself, but for people who will be assisting you:

With a ventilator, breathing occurs through a tube inserted through the neck, nose, or mouth. An inflatable cuff tracheostomy tube is often used in the neck to maintain pressure into the opening and prevent respiratory gases from escaping around the outside. The cuff precludes the user from being able to speak, although it can be deflated for periods to allow speech.

After the acute stage, some people pursue the goal of using a Jackson tracheal tube, which allows speech. The tracheal opening requires greater care to prevent infection and drainage of secretions than when the inflatable cuff is used.

The acute period in rehab when a cuffed ventilator user is unable to speak is very frustrating for the user and family. Communication options are reduced to smacking the lips or clicking the tongue to get attention. Lip reading, eye blinks, or a spelling board are sometimes tried. You might be afraid of not being heard over the sound of the machine. Experienced rehab nurses are very aware of these issues and will teach various options. They will do their best to be readily available and responsive and to encourage the presence of family to help reduce everyone’s level of anxiety.

The tracheal tube needs to be changed, depending on the sensitivity of the opening to infection and the amount of secretions. Some people change the tube every two to three weeks, but each person finds a pattern, as does this woman with postpolio syndrome and quadriplegia:

Ventilator users are generally unable to cough up secretions on their own. The respiratory therapist or rehab nurse might use a technique of assisted coughing, in which pressure is placed in an upward motion at the base of the rib cage to release mucus from the deep sacs of the lungs. Suctioning secretions is part of the ventilator experience and is done as often as every eight hours for some people. It is important not to do suctioning more than necessary, since it irritates the trachea and can increase secretions, as well as the risk of infection. A suction machine is usually kept near the bedside, and portable models are also available. Family and assistants can be trained in suctioning. At first, suctioning is a scary thing—having the air sucked out of you to try to get mucus up. But as time goes by, it’s just a way of life.

Some people will always need to use a ventilator 24 hours a day. Others wean from mechanical ventilation and are able to breathe on their own, even if for portions of the day. Whether you are expected to breathe on your own or not, the respiratory therapist will develop a weaning program for you.

Using a ventilator at all times allows respiratory muscles to atrophy. Even five minutes of breathing on your own several times a day helps maintain some tone. A typical goal is to achieve the ability to breathe unassisted for 10 to 15 minutes. In the case of a mechanical disruption, the ability to breathe without the ventilator for a brief time until assistance arrives obviously means the difference between life and death.

Since depression is a very common feature of the acute stage of high quadriplegia, the rehab team will typically suggest that you wait until you are stable psychologically to begin the weaning process. It takes a certain degree of motivation to participate in the weaning process, which can be frightening. A respiratory therapist will always be present during any weaning session, and all staff members are trained in the use of a manual resuscitation bag, which should be kept with you at all times.

The goal of the psychologist is to work with you as an ally to help change mental patterns that can limit you. In the past, you would only have been referred to a therapist if you were considered a “problem patient” or in such deep despair that staff was concerned for your safety. Present-day rehab therapy takes a different view. Powerful feelings, confusion, or rebellion are widely recognized as understandable reactions to sudden disability. Rather than stigmatize people who experience extreme emotion, now psychologists work with everyone to help them deal with their feelings, understanding that the feelings are adaptive reactions and part of your survival process.

There are many possible emotional responses to a disability. Many factors come into play, including age, degree of injury and impairment, financial and class status, cultural expectations, and so on. How the disability occurred is also crucial, as peer support coordinator Rich Patterson explains: