Is there driving after MS?

Ask any group of people with MS what makes them feel most independent, and many are likely to answer, "driving my car."

Just how good a driver can you be with MS? Dr. Randall Schapiro, neurologist and director of the Fairview MS Center in Minneapolis, says "probably most people with MS can drive without much difficulty."

As a person with MS, you can give yourself a helping hand if you drive the right kind of vehicle. Make sure your car or van has power steering, power brakes, and an automatic transmission. All of them make driving easier, and use less of your energy when weakness, numbness or fatigue are factors to consider. If you have additional needs or are thinking long-term, you may want to consider getting a van that can be modified to incorporate a variety of disability aids and options. But vans are expensive.

You should also analyze the kind of driving you will be doing. Physical limitations or problems with concentration and memory may not be a major consideration if you're driving in light traffic in the country. Driving in heavy rush-hour traffic in large cities is a very different ball game. But MS is a changing disease, and a good driver today may not be safe on the road tomorrow. Or a good driver may need good adaptive equipment in order to stay a good driver.

Do You Need Help?

Sometimes it's hard to tell. How well you can walk doesn't necessarily reflect how well you can drive. "Many people with MS who can't walk are still able to drive well and safely with the proper tools," Dr. Schapiro says. "And there are others who can walk well but lack the concentration to operate a vehicle safely in heavy traffic."

Sometimes it's easy to tell you need help. One of Dr. Schapiro's patients, William J. La Marre, of Hayward, Wis., who was diagnosed with MS in 1988 at age 52, recalls that he progressed rapidly from using one cane to two, and then to crutches.

"All that time I kept on driving my regular car, but there came a point where I couldn't be sure that I would always be able to brake quickly enough and effectively enough. I didn't want to take any chances of hurting someone."

So how can you decide what's best for you?

The surest way is a professional evaluation, which includes clinical testing as well as hands-on sessions behind the wheel. Such an evaluation can determine what adaptive equipment you may need to modify your vehicle and what kind of driver training would help keep you going. It might even indicate that you need to stop driving.

Dr. Schapiro's clinic provides such evaluations, as do many rehabilitation hospitals and centers around the country.

The Association of Driver Educators for the Disabled (ADED) can provide you with a list of members in your state who offer driver evaluations and/or training for persons with disabilities. Write to: ADED, P.O. Box 49, Edgerton, WI 53534, or call 608-884-8833.

William La Marre's driving evaluator recommended standard hand controls. A typical hand control has one lever that is attached to the accelerator and the brake and can be used for both functions. The driver uses the other hand for steering with the help of a knob or other device that gives a firm one-handed grip on the wheel.

La Marre eventually decided to buy a modified van, a seven-year-old Ford with 15,500 miles on it and a price tag under $18,000.

Jan Whiteford, of suburban Minneapolis, also has a van that she treasures.

"You have to look at hand controls or a lift-equipped van not as a dependency thing but a means to independence. They don't make you less of a person, but more. I look at all aids that way," she said.

Both she and La Marre say their vans enable them, accommodating a wheelchair or scooter and allowing independent transfers into the van's driver seat.

Maureen Flaherty, supervisor of occupational therapy for the University of New Mexico Hospital's rehabilitation services, described a typical driver evaluation. "We focus on vision, mobility skills, trunk balance (can the driver sit up without support?), arm and leg strength, overall coordination, braking speed, and ability to concentrate.

"We may recommend supportive seating, as well as a variety of adaptive aids for different abilities. For example, some people find devices that require pinching between the thumb and first two fingers are much more difficult to operate than controls that are wider. Often small steering wheels are easier to operate than large ones."

Flaherty says a standard initial driver evaluation takes about two hours. Then Flaherty and her staff may prescribe an exercise program and follow-up visits once or twice a week.

Many hospitals and rehab centers have computerized vehicle simulators for initial tests, but to see how effective drivers are in traffic, they are often asked to get behind the wheel of a real car. Flaherty uses three Albuquerque driver-training companies.

Rod Doll, owner of the New Mexico Driving School, not only evaluates drivers, but also teaches a wide assortment of people with disabilities, including those with MS.

"It's not unusual for MS drivers to have various weaknesses, but the driving itself can be a kind of physical therapy," Doll said. "Muscles used a lot in driving may get stronger with practice.

"One woman was scared that she wouldn't be able to rely on her instincts or physical ability in traffic. We drilled and drilled, and she got pretty doggone good. Among other things, we showed her how to compensate by braking a little earlier and by taking turns a little more slowly."

In his driver-training car, Doll keeps a back seat full of different steering devices, left and right-handed gas and braking controls, and a variety of mirrors. One is more than a foot wide to provide side-to-side rear viewing for those with minimal head movement.

How many driving lessons does a person with MS need? "It all depends on the individual," Doll said. "It could be one or ten or forty."

Not every community has a driving school or instructors experienced in teaching drivers with MS or other disabilities. The American Automobile Association (AAA) is working to remedy this problem. Each spring, the AAA offers a ten-day training course focusing on disabled drivers for driver educators, evaluators, trainers, adaptive equipment manufacturers, and occupational therapists.

The AAA also offers a useful and inexpensive driving course that may be of interest to people with MS. It's called "Safe Driving for Mature Operators," but anyone may take it. It covers improving reflexes, night driving, visibility, judging traffic, keeping a margin of safety, dealing with emergencies and handling the effects of medication.

The "Safe Driving" course ranges from $12 to $30 for AAA members and $15 to $60 for non-members, with prices varying slightly from state to state.

The newly revised AAA manual, "Disabled Driver's Mobility Guide," is also available at AAA offices for $5.95 to both members and non-members. This guide covers such topics as roadside services, adaptive equipment, driving tips and a list of helpful agencies.

For more information on AAA courses or the "Disabled Driver's Mobility Guide," write Kay Hamada, Mail Stop 76, AAA Traffic Safety and Engineering, 1000 AAA Drive, Heathrow, FL 32746-5063. Or telephone [phone].

RELATED ARTICLE: Life After Driving

If it's time to turn in your driving gloves, don't give up. You don't have to stay at home. You shouldn't stay at home. There are alternatives.

1. Check out mass transit systems. Talk to your local NMSS chapter about access to local public transportation. Many communities have vans or buses that pick up people with disabilities at their homes, or "kneeling buses" that are part of the regular bus system. The Americans with Disabilities Act says that any transportation for the general public must be available to those who are disabled. But you might need to rattle some chains to make that real where you live.

3. Share rides. Sharing rides is one of the most responsible ways of reducing automobile pollution for anyone, disabled or not. Ride-pooling organizations help to match up individuals with similar routes, destinations and schedules. Don't be hesitant to join one because you can't share the driving; many ride poolers are only too glad to take on someone who helps out with the cost of gas. Organize people you know into informal ride pools too.

4. Barter. You probably have friends who drive and yet don't have that super computer that you have, or can't turn out blueberry muffins that taste half as good as yours. There's always something that you can do better than someone else, and you can make a trade for a ride.

5. Try a scooter. Obviously you can't drive a three-wheel scooter long distances. But for short runs to the store, or to see a friend down the street, a scooter or electric wheelchair may substitute for your car. Some models are built ruggedly for outdoor use. First check with your doctor, however, since some of the disabilities that keep a person from driving a car could also make scooter driving unsafe.

RELATED ARTICLE: Do You and Your Car Need to Adapt?

There's more than one way to drive a car. An auto accessory company may make a device that can help you get around your difficulty and stay behind the wheel.

The most common device is a manual hand control if your legs are too weak or numb for pedals. They range from $450 to $850 and can be moved from vehicle to vehicle. You will need a car with an automatic transmission.

Rod Doll says hand controls all but eliminate the reaction time a normal driver takes between recognizing the need to brake and the actual application of the brake.

"Your hand never leaves the control that operates both accelerator and brake. Because the accelerator device is spring activated, all you do is release the gas and apply the brake. You don't have to move your hand at all.

"Those who find the steering wheel too difficult to turn can install low or zero-effort steering wheels," Doll added.

New modified vans generally cost between $22,000 and $30,000, according to Becky Plank, executive director of the National Mobility Equipment Dealers Association. Those with state-of-the-art joystick controls, for people with very limited movement, can run as high as $65,000 or $70,000.

In general, your occupational therapist is the best source of information on the adaptations that will perform for you.

Adaptive equipment installers abound, but make sure you hire someone who knows how to do it correctly. Contact the National Mobility Equipment Dealers Association (NMEDA), at 909 E. Skagway Ave., Tampa, Fla., 33604, telephone: [phone]. Your chapter may also be able to fill you in on local installers.

With a little planning, adapted vehicles, devices, and the cost of installation may be tax deductible. See INSIDE MS, Winter/Spring 1995, page 17.