Moving On.

DON'T JUST sit there. There is something you can do about your mobility. It's called rehabilitation. The term is more commonly used in connection with accident victims or people who have suffered strokes, but today it includes people with MS, as well.

"Rehab is a relatively new concept for MS, perhaps because of the long-standing belief--now known to be incorrect--that exercise has a deleterious effect on people with MS," said Dr. Mindy Aisen, director of the Rehabilitation Research and Development Service of the Veterans Health Administration in Washington, D.C.

A CALL FOR ACTION

Rehab for people with MS is a concept that has been long in coming. "I've been doing this for 19 years," said Dr. Mike Berlly, medical director of the Santa Clara Valley Medical Center in California. 'At first, the only people with MS who were referred to me were bedridden. I have been campaigning to educate doctors that rehab can do the most for people who are recently diagnosed. The earlier we start, the more helpful we can be."

Dr. George Kraft, director of the University of Washington MS Clinical Center in Seattle, is a leading pioneer of rehab in MS. He puts it this way: "Rehabilitation is clearly the only practical means of significantly improving function in people with MS."

Does that mean a rehabilitation program can keep people with MS on their feet? Yes and no. The specialists say this may be the wrong question. Well over half of all people with MS can walk 25 years after their diagnosis.

But as rehab guru Dr. Randall T. Schapiro, of the Fairview MS Center in Minneapolis, analyzes it, people with MS commonly have "impaired" mobility. They can walk, but they may have weakness, balance, and coordination difficulties, numbness in the legs, spasticity, and tremor. Any of these, alone or in combination, is often complicated by fatigue, depression, or heat intolerance. They may also have "neuromuscular" MS fatigue. That's what's happening when a person with MS walks a short distance normally, but then develops a limp, and soon can't walk at all. All these problems lead to reduced physical activity -- which creates a vicious cycle. Lack of exercise causes loss of muscle tissue and general "deconditioning", the medical term for way out of shape. So mobility problems can easily get worse and worse.

There are many other reasons why someone with MS may have trouble walking independently. Rehab may not keep everyone on their feet. Some people need to get off their feet to have a better quality of life. Rehab offers many different techniques and therapies for dealing with the different problems.

To Dr. Berlly and other specialists, the rehab concept means learning ways to lead one's life in the most functional way possible. As Dr. Schapiro says, "People value being ambulatory on 2 legs way beyond its true value." These doctors divide a function--for example, moving from one place to another--from the means--moving by foot or moving by wheels. If you can only walk 100 feet before exhaustion sets in, the rehab specialists say you need to use a scooter or a wheelchair for the function of getting someplace. If you fall down because your balance is unreliable, you need a balance prop, be it a set of Canadian crutches or a rolling walker, to get you where you want to go without injury. The rehab gurus are very calm about it. They don't consider the use of an aid as "a slippery slope" at all.

Different rehab therapies focus on different, functions, offering assistance, instruction, or adaptations to meet different needs. Here are the most common:

PHYSICAL THERAPY

Physical therapy, or PT, is probably the most familiar rehab technique. PT uses training to restore useful movement or function to weakened or uncoordinated muscles. Physical therapists teach walking--to correct bad habits, and to help compensate for poor coordination and balance--as well as lessons on how to fall. (There really are some body-saving tricks!)

Some PT programs offer "vestibular rehabilitation" to help individuals overcome dizziness and imbalance. In fact, some rehab facilities use a computerized assessment trod training device that employs interactive technology to guide and prompt a person through a series of exercises.

If warranted, a PT will teach exercises to develop upper arm muscles and the most effective way to use canes, braces, crutches, or walkers in and out of doorways, up stairs, and around barriers. "Very few people can use a cane or crutch without instruction. You'll need a lesson or two from a therapist," Dr. Berlly said.

A PT can teach correct use of a wheelchair or scooter, too. Dr. Berlly often recommends that people try out a scooter in a supermarket. "Just see how it goes," he'll say. He knows most people resist using this kind of equipment. Once the choice to use one is made, a PT teaches "transfer techniques"--the safest, easiest way to get from a wheelchair or scooter into a car or onto a toilet seat independently--and may also provide invaluable help making sure the device fits the body of its user.

OCCUPATIONAL THERAPY

Occupational therapy, or OT, is frequently confused with vocational rehab, but actually focuses on the "occupations" of daily life. They include grooming, dressing, eating, writing, and that all-important mobility issue, driving. Certified driver rehabilitation specialists provide evaluations, recommendations for special equipment, and training to help people maintain wheeled mobility through safe driving.

When it comes to saving energy, the OT may be your best friend. If referred by your physician, ma OT can:

* Visit your home or your workplace and recommend ways to do things that conserve energy and make your life easier

* Suggest changes to your environment, such as reorganizing your office so the things you need most often are within easy reach, or modifications like grab bars for safety in the bathroom.

* Teach techniques to compensate for weak memory, such as keeping a calendar or a reminder notebook.

* Teach computer technology, such as using a voice-activated computer or a different kind of keyboard.

* Educate family members about how they can help.

VOCATIONAL REHABILITATION 

Yes, employment is also part of a rehabilitation program. "Voc rehab" helps people adapt their existing job skills to a different job, or provides retraining in something new (frequently, for people with MS, something computer-related).

THE WAR ON FATIGUE

Fatigue is a major factor in mobility. There are some medications that can help MS fatigue--and there are adaptations. Dr. Berlly starts by sorting out potential causes and contributing factors. What if you' re depressed? Maybe you've got an infant at home. Maybe your job hours are too long. Do you have insomnia?

"If I can identify and eliminate treatable factors, perhaps I can reduce the level of fatigue," Dr. Berlly reasoned.

Along with medical treatment, there are energy management techniques. Getting up from a standard seat takes more energy than getting up from a high stool, for example. People can start with fairly simple things.

* Pace yourself.

* Take a break for lunch.

* Lie down for 15-20 minutes in the afternoon.

* Explore a mobility aid.

Does this last idea seem radical? Many people with MS who enjoy socializing at night are too exhausted by afternoon to go out later. "If you use a scooter during the day you may have the strength to dance at night," Dr. Berlly said. "Conserve energy for what you really enjoy doing."

FINDING EXERCISE PROGRAMS THAT FIT

For some people, on some days, just getting dressed in the morning takes all the energy they have. So gentle stretching or relaxing might be all the exercise they need. "What's good exercise for one person with MS can be terrible for the next," Dr. Berlly explained. Swimming is often recommended, but he points out that many indoor pools are way too warm for people with MS. Moreover, for some people, the effort of getting to the pool, changing clothes, showering, and getting dressed again is more exertion than they can tolerate. Exercise programs need to be individualized. They may also need to be different on good and bad days.

REHAB LIVES HAPPILY WITH COMPLEMENTARY THERAPIES

Many forms of non-traditional therapy are offered at comprehensive MS care centers. While little or no scientific data exist to warrant including them, there is plenty of anecdotal evidence to show that certain activities enhance personal health and well-being, and that helps people with MS keep moving on.

The MS Care Center at the Hospital for Joint Diseases in New York City, for example, offers classes in yoga, Tai Chi, Feldenkrais movement, biofeedback, relaxation, and cosmetics and hair styling classes.

"These things make people feel better about themselves," said Dr. Joseph Herbert. "Not every intervention has to have a direct effect on one's disability score or the number of lesions seen on an MRI. Leading a productive and happy life might be more important."

REHAB THERAPIES ON THE HORIZON

STUDIES BY University of Alabama researchers show that stroke patients who are forced to use the paralyzed limb instead of the good one regain almost full use of the disabled limb after 2 to 3 weeks of intensive therapy. This focused intensive movement therapy forces the brain to reprogram itself, even years after the stroke occurred. No comparable studies have yet been done in MS, according to Dr. Mindy Aisen at the VA, but "it makes sense that this ought to apply to MS. Like everything unproven, the idea is controversial.

"It's difficult to study MS rehabilitation because the disease is so unpredictable. This means many people must participate in a given study to obtain statistically meaningful data," Dr. Aisen commented. On the other hand, if new strategies for MS are not studied, we'll never know what genuinely helps people." So, the Veterans Administration will investigate.

This kind of therapy is labor intensive. It requires a therapist to sit with a patient and repeat a series of movements over and over and over. Trials using robots to provide this for people with MS are in the planning stage at the Maryland VA Center. Dr. Christopher T. Bever, chief of Neurology Services at the Baltimore Veterans Affairs Medical Center, explains: A robot takes the person with MS through the exercises, assisting just as a therapist would, and providing a boost to help someone who can't do it alone.

"The robotic device makes it more like a game," he said. "You try to reach for something, and the robot pushes your arm aside. You have to overcome this disturbance. It's a contest."

For more information about this study, telephone [phone].

WHO OFFERS MULTIDISCIPLINARY CARE TEAMS?

SPECIALIZED MS care centers, of which there are now more than 200 across the country, offer a team approach to managing MS--and full-service rehab programs. These centers pull together the resources of 10 or 12 different specialties. Staff may range from physical therapists to neuro-opthalmologists to manage all symptoms and underlying conditions, including quality of life issues, and how MS affects families and the community.

"It's a return to the past, with the doctor being involved in all the ramifications of a patient's life," according to Dr. Joseph Herbert, director of Rehabilitation for the MS Care Center at the Hospital for Joint Diseases in New York City.

To find out if a comprehensive MS care center is near you, contact the National MS Society or check out the Web site of the Consortium of MS Centers at <www.mscare.org>. If an MS center isn't practical for you, work with your primary-care physician to assemble a team of your own.

A WHEELCHAIR? A SCOOTER? WHAT'S BEST?

A SCOOTER is generally advised for someone with weakness in the legs but strength in the arms and upper body--or for someone who can walk short distances around the home or office, but has trouble going longer distances.

A manual wheelchair might be best for someone who's not limited by fatigue and has good upper body strength. Sports models are available for basketball, racing, and tennis. Moreover, wheeling is good exercise.

A power wheelchair is more rugged than a scooter, and offers more support than either a manual chair or a scooter for someone with upper body balance difficulties. But it may be a poor choice for someone with impaired vision, as driving it could be dangerous.

And there are other factors to consider. A manual chair is easiest to transport in a car. A motorized chair or scooter needs a ramp or a lift. Do you have space limitations? Will a scooter fit in your house? What about access? Manual chairs go up steps easily, but a power chair will need a ramp.

So, how do you choose? Doctors often aren't well versed in the subtleties of wheelchairs versus scooters, according to Dr. Joseph Herbert of the MS Care Center at the Hospital for Joint Diseases in New York City. And people need professional help to select the device that fits their body and their needs.

Dr. Herbert has created a Web site, <www.wheelchairnet.org>, to provide information about wheelchair safety standards and technological advances. Visitors can ask questions of other users and discuss common issues and concerns.

Most rehab facilities offer mobility clinics. At a clinic, people can test several different devices before deciding. Or, a PT or OT can arrange for vendors to bring sample vehicles to your home. A Guide to Wheelchair Selection is available from Paralyzed Veterans of America for $12 plus $5 for shipping and handling. To order; call 1-888-860-7244. All these options are better strategies than simply buying something "off the shelf," Dr. Herbert stresses.

TECHNO-FIXES ON THE HORIZON

IT WALKS, it stands, and it climbs the stairs ... It's the IBOT wheelchair, newly created by Johnson and Johnson. Still experimental--and very costly--it has sophisticated features that are destined to find their way into new mobility products in the future. For instance, it uses gyroscopes to stabilize the chair while it is in the standing position so that body weight doesn't tip it over.

Tamar Asedo Sherman is a journalist who covers health issues. She has been living with MS for 23 years and uses a wheelchair to move on.