Life on Wheels (8 page)

After you have had a paralyzing injury, the map of your body changes. Your new center of gravity depends on the level and type of injury. Lower-level spinal disabilities leave more trunk muscles in contact with the brain. Use of the hips and abdominal muscles makes a big difference in your ability to maintain balance and stability while sitting and while engaged in any physical activity. With the loss of control of trunk muscles, more support is required from the wheelchair, and you will rely even more on arm strength to move your upper body. Strengthening can make the difference between independence and reliance on support.

In addition to building the muscles you will use when you propel your chair, you also need to gain experience using the chair. Your body learns from doing, and your nervous system and muscles adapt. At first, using the chair will feel awkward and foreign. You will have to think carefully as you wheel, whether by pushing on wheels, operating a joystick, or using breath control. It will not feel natural because you are unaccustomed to it.

The physical therapist’s goal is to help you develop expertise in your chair. There are some refined movements that you’ll have to think about at first, but, eventually, it will become second nature. For instance, when you turn a manual chair, you might either pull back on one wheel or else hold one wheel in place as you push the other, depending on the turning radius you need to achieve. You will apply just the right pressure in the right direction on a joystick, letting go to allow the precise time the chair needs to decelerate.

If you have sufficient strength and balance, you are likely to be taught to do a “wheelie,” to negotiate curbs or single steps, going up and down. The technique is also helpful on uneven terrain. These skills extend independence and are worth learning to the degree you are able. Safety is the first priority.

Your therapist should prepare you for falling out of a wheelchair. If you play a sport like wheelchair basketball, hockey, or rugby, you can count on falling out. Even if you are careful and have excellent wheeling skills, accidents can happen. The therapist will teach you how to fall, practicing it with you so you will not be afraid. You can develop a natural, habitual reaction that protects you by properly breaking your fall. The therapist will teach you techniques for getting back into the wheelchair. If you have the strength, you’ll be able to learn to transfer into your chair directly from the floor or by lifting yourself onto successively higher surfaces. If you don’t have the strength or balance to perform such transfers on your own, it is still extremely valuable for you to learn to guide the people who will be assisting you.

It is not always clear that someone should be using a wheelchair or for how long. Someone with MS might need one during a severe exacerbation or in the later stages of progressive MS. A person with brain injury might need one early on but, later, might reach a stage of needing wheels only for trips and when away from home. Viki Solomon is a rehab nurse who works with brain injury clients:

The process of rehab should be about determining your proper relationship with a wheelchair, not to make you dependent on it when it might serve you best as a part-time tool. Therapy in that case would be to develop skills for using wheels, while at the same time working to optimize your walking abilities.

This woman in her forties has spinal cord quadriplegia, but she has limited ability to stand and walk. For her, the wheelchair proved to be the better solution, despite the beliefs of rehab staff:

In the initial stage after onset of a mobility disability, it is entirely natural to want to walk, even if by means of some assistive devices. Based on the rehab team’s assessment, you might be considered a candidate for gait training with braces and crutches. There is undeniable value to be gained from standing and gait training: reaching high surfaces, interacting with other standing people at eye level, or being able use an inaccessible bathroom. Weight bearing on your legs helps maintain bone health, warding off osteoporosis, a common secondary deficit that occurs with mobility disability. It also helps keep the tissues throughout your legs stretched, limiting the tendency towards contracture—chronic shortening of tendons and ligaments—which is another typical effect of paralysis.

Yet, standing takes some effort; balance has to be maintained much of the time with your arms using the crutches. It can be awkward to reach for things on that high shelf when you have to maintain your balance or to enjoy that conversation at eye level if you’re getting tired from supporting yourself upright. The work it takes to develop the strength and skills to use braces is intensive. It is not for everyone. Dr. Michael Scott of Rancho Los Amigos describes how he approaches the option of gait training:

Uli Salas, of HealthSouth Rehabilitation Hospital, states:

Gait training involves being fitted for braces to keep knees from buckling and feet from dropping as you propel yourself using crutches or a walker. Some braces provide support for the hip as well. Most are made of metal or plastic. Braces in general have become lighter in weight, and some can be worn discreetly underneath clothing. If you have little strength in the buttocks and upper leg muscles (which lock the knees), walking in this way relies almost entirely on your arms and shoulders. Generally, people with injuries above T12 are typically not considered candidates because of lack of enough stability in their waist and abdomen. If you experience muscle spasticity, this is likely to exclude you as well. Gait training is not for everyone, but, if you really believe it is possible for you and you want to give it a shot, advocate for your chance to try:

As compared to this person who didn’t experience much success:

Since walking with braces is tantamount to being on stilts, there is a risk of falling, breaking a bone, or developing a sore if you accidentally bump yourself or are forced to sit on a hard surface; if you have atrophied buttock muscles, you will have trouble finding properly cushioned surfaces. Most people find that using a wheelchair is easiest and safest for their daily activities, but some like to be able to stand and walk, perhaps maintaining the skill to be used in certain situations—such as walking down the aisle at their own wedding.

There are a number of programs that offer intensive walking therapy employing braces. They typically involve months of work and considerable expense not likely to be covered by your insurance and are not associated with a formal rehab center or hospital. Check out walking clinics carefully, and talk to others who have gone through the program. People give mixed reactions to these programs. Some say they were drawn in by a desire to stand, based on elaborate promises that did not come to pass. Others say they were urged to have reasonable expectations from the start and gained functional abilities beyond what they were able to achieve in rehab.

You might be a candidate for FES (functional electrical stimulation) walking, in which electrical impulses make your muscles contract to reproduce the movements of walking. This technology is still developing, but some people are using it in their daily lives. It can be used by some people with injuries higher than T12, although it still involves intensive training and sufficient strength. FES is discussed in Chapter 6, Spinal Cord Research.

There are a number of patent applications in place for power-assisted gait orthotics. Motors and batteries have all become smaller and stronger, and microprocessors are able to read information, such as the amount of force on your leg or foot, as well as the position of your knees and hips. One particular design has buttons on the crutches that the user presses to cause one leg or the other to swing forward. Clearly, researchers, inventors, and entrepreneurs are not going to give up lightly on helping get people with paralysis back on their feet. The trick will always remain to balance emotions and desires against practical value and the investment of your time and money.

The occupational therapist is primarily concerned with the practical activities of your life known as activities of daily living (ADLs). The occupational therapist will condition and train you to optimize self-care and your ability to work and perform typical daily tasks. The therapist’s expertise is in techniques and tools to increase your independence. Occupational therapists will teach you methods for making transfers and for performing bowel and bladder management. The occupational therapist is usually the person involved in wheelchair selection, often in cooperation with the wheelchair vendor (see Chapter 4, Wheelchair Selection).

Jody Greenhalgh compares occupational and physical therapy:

In occupational therapy, you might find yourself making cookies or doing a craft project like stringing beads. Some people make the mistake of thinking they’re being trained to perform a menial job, but this is not the case. Such tasks are used therapeutically as a way to improve your dexterity and your ability to recover cognitive skills (especially in the case of brain injury) and to retrain muscles that might have become weak or lost coordination. Making cookies might help you pursue a career as a medical technician. Don’t judge the task. Consider the goal.

Sometimes the occupational activity is also exercise, as a man with spinal cord injury recounts:

Occupational therapists are very involved with orthotic devices. They might fabricate splints or braces, working with an array of materials they can shape to your body. Occupational therapists might make a functional brace that gives you greater leverage for a task or keeps your hand and fingers from curling with muscle contracture.

Focusing on activities of daily living is perhaps the greatest portion of the occupational therapists’ work. Every rehab facility has a kitchen, a bathroom, and often a bedroom or other areas of a home where they can simulate conditions, helping you learn to function in these spaces. Activities of daily living address such activities as: