Life on Wheels (3 page)

Use the rehab experience to keep yourself in optimal condition. By waiting for recovery rather than working with what you have, you risk robbing yourself of motivation to gain skills that might contribute to your degree of independence. Do the work available to you, adapting as much as possible to your condition while working to foster your recovery. Learn skills being taught, even if you don’t expect to be using them for long.

The rehab experience has changed much in the past 20 or so years. You generally are admitted to rehab sooner, and the “length of stay” has gotten shorter. You no longer have the luxury of many months of adjustment and training, which means that you will go home with less than your full ability—your inpatient stay is just a beginning.

There are plenty of things about rehab that are far better than 20 years ago, including the following:

The evolution of wheelchair design has advanced so far that rehab professionals are now able to fit people to their ideal chair and extend their independence in ways that had not previously been possible.

Bedding and cushion technology have significantly reduced the risk of decubitus ulcers (skin breakdown), which have often interfered with being able to participate in the rehabilitation process.

Assistive technology has evolved that gives people with limited arm use much more control over their environment. Rehab centers increasingly have dedicated staff who identify such solutions and provide training during the rehab stay.

Psychological, sexual, family, financial, and political dynamics of disability are addressed in ways that they were not in the past.

Stays of several months in rehab were once common. Longer stays allowed people more opportunity to develop strength, gain skills, and make psychological adjustments and for family members to prepare for the return to home.

Stays of several months are now very rare, given current insurance coverage. There are exceptions. Veterans Administration rehab hospitals have achieved a much higher level of quality than you might remember from the film
Born on the Fourth of July
. Veterans are more likely to be sent home when they’re ready instead of when the clock runs out on insurance. Those covered by workers’ compensation also sometimes fare better; some rehab centers are able to exert more influence on funders. Some succeed at getting funded for an optimal length of stay by the sheer force of strenuous advocacy, often asserted by a family member or friend. A person’s claim must generally demonstrate that he or she is continuing to make gains in order to be allowed to stay. However, much rehab work is slow and small gains are the natural pace. The pressure to show progress can cause great stress.

Longer periods of acute care in a hospital before transferring into a rehab program were once the norm.

The common practice now with spinal injuries is to mechanically stabilize the spine with surgically-implanted “Harrington rods” and get you up. There are often secondary injuries in traumatic accidents, such as broken bones, injured organs, or even a brain injury. There might not be a full commitment to optimal medical stability before heading to rehab. Some people arrive less than fully prepared to benefit as much as possible from the intensive work of inpatient rehabilitation.

For people who find themselves in rehab only days after a disabling injury, it can be very difficult to commit emotionally to the rehab process— assuming they are even medically stable enough for the hard work of rehab. Says Dr. David Chen of the Rehabilitation Institute of Chicago:

The initial, acute period of medical recovery can be an important opportunity to make the emotional adjustment to disability and find out more about what your degree of impairment will actually be. Some people do regain function, after all, and this informs choices made in the rehab program.

A person with a traumatic injury needs more than medical stabilization. The psychological shock and its social implications can be massive, but the short rehab periods that are now typical barely allow people to begin these adjustments. Dr. Marcel Dijkers, a rehab researcher at the Mt. Sinai School of Medicine in New York City, observes:

Short stays also put the squeeze on patient services staff who are trying to organize equipment, modifications, support resources, and financial coverage you will need when you leave. Bonnie Sims directs the Patient Services Group at Denver’s Craig Hospital. She says: “Resources may be out there, but the challenge is to call them into play within the time allotted.”

Despite shorter stays, rehab can become comfortable and safe compared to the outside world, which can seem quite scary to someone about to return to that world on wheels. Rehab staff are very aware of the danger of allowing people to get too settled into rehab, where they are in a largely obstacle-free setting, are taken care of, don’t need to discipline themselves thanks to a built-in schedule of activities, and are generally surrounded by people who understand their disability. At some point, it is time to move on. And it is important to not delay that time unnecessarily.

Those with high quadriplegia have a number of unique issues to deal with. They might use a ventilator to breathe and might rely more on others to get dressed and get in and out of their chair. They are unable to do their own pressure-relief lifts and have more extensive muscle atrophy, so they are at greater risk of developing pressure sores. Sores limit the ability to participate in therapy and might make a longer stay necessary.

Rehab practitioners must squeeze much more treatment into much less time. Many mourn the fact that they know they are unable to accomplish as much as they want and that people are not being given sufficient time to adapt to what has happened. Since rehab now begins so soon after injury, the focus is placed more on medical stabilization. Says Dr. Alex Barchuk, physiatrist at the Kentfield Rehabilitation Hospital in northern California:

Sandra Loyer, clinical social worker at the University of Michigan Rehabilitation Unit, sees that, rather than helping people to complete rehab, staff must teach people to do it for themselves after they leave:

In other words, having made the best possible effort to ensure you get to rehab only when you’re good and ready, once there it should be recognized as a precious opportunity that will last for only a limited time. Even if psychological strain is telling you to resist, do all you can to keep moving forward with the guidance of the rehab team. You don’t want to look back on this period with regret that you didn’t make the most of it. Your rehab stay, no matter how long or short, will make an inestimable difference in the quality of life you ultimately achieve.

It can be beneficial to initiate the rehab process sooner so you can begin to develop strength and skills. The goal of early rehab is to make the healing process more efficient—which saves costs and also speeds your return to independence. This early rehab approach can also head off certain risks associated with extended bed rest, including progressive weakening, pressure sores, contracted muscles, infection, or falling into a depressive or angry state. Any and all of this can interfere with your eventual commitment to the rehab process.

Shorter stays have also motivated rehab providers to tighten the efficiency of their programs. The luxury of longer stays did not require them to design a rehab stay so that a person made the most progress in the best possible time span. The pressure from insurance companies has motivated providers to tighten up their systems, as well as to pursue more detailed research into what really works. Dr. Scott of Rancho Los Amigos states:

At some centers, it has become common practice to send a quadriplegic home with a halo on and discontinue therapy until it is time for the halo to come off. Rich Patterson has C5 quadriplegia and directs the peer support program at the Santa Clara Valley Medical Center in northern California. He says: