Life on Wheels (9 page)

Grooming

Bathing

Dressing

Feeding

Housekeeping

Using of automated environmental controls

Driving (this might also fall to the physical therapist or a specialist)

In the bathroom, you might have sufficient control to transfer from the wheelchair to the toilet for bladder and bowel activities. Transferring from the chair involves body strength, dexterity, and balance. Some people will always empty their bladder from a catheter or leg bag. Your bowel program might be more easily performed in bed with a bedpan. You may never need to transfer to the toilet. If your abilities and program make transferring appropriate for you, the therapist will have you try the transfer from a variety of positions, since, in public places, you will encounter restrooms with limited space near the toilet.

You will explore the best method for getting dressed, which might be done lying down, possibly using assistive devices such as extended shoehorns, button pullers, and grabbers to help pull up your pants. Getting into and out of your clothes is another task that some people will need to perform in the bathroom, a task that is very doable with sufficient arm strength. You might have no need to undress in a public restroom, reserving your bowel program for home, using a leg drainage bag for your bladder, or doing intermittent catheterization that only requires that you open your pants rather than get them down altogether.

More adaptive methods and devices come into play in the kitchen than perhaps anywhere else in the home. You can use a grabbing device to extend your reach to high shelves. There are utensils for quadriplegics that require no grip strength to use. There are lap tables for cutting and other tasks that are awkward at typical counter heights. The occupational therapist will teach you to be extra cautious of handling hot items, since you cannot move away from a sudden spill as easily. If you lack sensation, you are at greater risk for burns.

John Hockenberry, a journalist with spinal cord paraplegia, tells of making stuffing for a Thanksgiving turkey in his book
Moving Violations
. The turkey was in a dish that had been refrigerated after cooking on the stove. The handles of the dish were cool, so he set it on his lap to work with. After a time he noticed unusual spasms. It took a while to realize he had set a hot pan on his lap. He writes:

Occupational therapists are concerned with more than techniques and tools. Their task is also to train you to change your habits and views. Hopefully you will not have to suffer burns, falls, or urinary slips before you build an awareness of these risks into daily life. Your therapist will tell you that new habits will seem unnatural at first. But, if you make a point of doing them, they gradually become transparent, part of your daily routine and lifestyle.

Christopher Reeve was unique in a number of ways, but, aside from his ability to be an international figure and advocate for disability, he was able to commit to an ongoing regimen of therapy. No one before—for lack of financial resources, time, or sheer persistence, all of which Reeve had in spades— had devoted themselves to this kind of extended therapeutic effort to regain function.

Then, amazingly, seven years after his injury, Reeve began to regain sensation below the shoulders and, most incredibly, was able to voluntarily lift a finger. He also worked doing supported walking in a pool, clearly contributing to some of the movement with his own leg muscles. No one with quadriplegia had ever before achieved such gains.

These startling events reinforced a recent line of research: the notion of a patterned response, suggesting that walking was not entirely dependent on nerve impulses traveling up and down the spinal cord. Reeve’s proof accelerated the way to an entirely new milieu of rehab and research—activity-based rehabilitation. Not only does activity help muscles to stay in touch with the nervous system, and support an individual psychologically, but is suspected to actually contribute to the very healing of the spinal cord and its search to restore the neuronal connections necessary for walking.

The Christopher & Dana Reeve Foundation has been funding research grants in a number of rehab settings through the NeuroRecovery network. Therapeutic techniques being employed include:

Locomotor training, in which an inpatient is supported upright with a sling above a treadmill where walking motions are simulated

Direct electrical stimulation to elicit movement from select muscles

FES bikes, which uses electrical stimulation to pedal a stationary exercise bike

Neurologist Dr. John McDonald—now at Baltimore’s Kennedy Krieger Institute, although his initial exploration of this new territory took place at Washington University in St. Louis—was Reeve’s physician and is now the standard bearer for activity-based rehab. Quoted in the
Baltimore Sun
, McDonald said, “In this new world, the nervous system is much more capable of change than we ever thought. Old ideas are starting to fade away.”