On the road. (Driving And MS).
That freedom can be threatened by several of the symptoms that accompany multiple sclerosis: vision problems, fatigue, muscle stiffness, slowed reaction time, and limited mobility that simply makes it difficult to get in and out of the driver's seat. These symptoms raise tough questions. "Can I still drive safely or am I talking chances?" "Will I have to give up driving?"
"There are different levels or demands of driving," notes Dr. John DeLuca, director of Neuroscience Research at Kessler Medical Rehabilitation and Education Corporation in West Orange, New Jersey. "It's not a yes-or-no thing: either you can or cannot drive. Instead, there are ways to continue driving safely but within limits, such as not driving at night and avoiding high-density highways or times when you are likely to be tired, or bothered by extreme heat. In addition to changing driving patterns, many people with MS continue to drive by using adaptations that involve physical equipment or vehicle modifications. (See "Adaptive Devices" on page 16.)
Nothing is as critical to safe driving as good eyesight. But vision problems in MS may be subtle. According to Dr. Laura Balcer, a neuro-opthalmologist and assistant professor in the Department of Neurology at the University of Pennsylvania School of Medicine, "A person with MS may have 20-20 vision on the black-on-white vision charts but still have episodes of optic neuritis when vision is blurry, eye movement is painful, or colors seem washed out.
"MS can affect the pathways or circuits in the brain that direct eye movement," Dr. Balcer said. "The myelin (the fatty material that insulates nerve fibers) in the brain or brain stem is affected by MS, so the pathways for colors, contrast, or shades of gray are affected. MS also can affect the optic nerves, which are the main highway, if you will, from the eyes to the brain. This may mean it's harder to perceive contrasts. That's why night driving is often difficult. Plus there's glare. People may need a prescription for eyeglasses that are best for night driving."
Double vision is another MS symptom that occurs from time to time. "Sometimes the double vision goes away if you cover one eye," Dr. Balcer said. "Some people use a patch over one eye when double vision occurs in episodes, particularly when they're tired."
And some people experience episodes when objects seem to jump around--particularly when looking to the side or down. Dr. Balcer notes that medications for this--gabapentin and baclofen--can dampen the bouncing of the eye.
Peripheral vision (the far right and left edges of the full field of vision) also can be affected by MS. Doctors rarely advise people to stop driving if only their peripheral vision is impaired because drivers can learn to compensate by turning their heads as they move to another traffic lane or turn a corner. But if something is coming in quickly from the side, a driver with poor peripheral vision may not see it in time to react safely.
Dr. Balcer advises people with MS to drive "only if they are comfortable and their vision is deemed adequate by their doctor. Use your judgment about when and where you drive and at what speeds."
Dr. Balcer is currently conducting research to improve ways of measuring vision in people with MS. "Good measures will hopefully lead to better therapies and strategies for vision problems in MS," she said.
"Most commonly, the first concerns are weakness in an arm or leg that may affect steering or pushing the foot pedals," said Dr. Maria Schultheis, a research fellow at Kessler Institute. Some people with MS find it difficult to push the brake or gas pedals because they lack extensor tone (the degree of tension in the muscles that serve to extend any part of the body), or they have trouble bending their knees enough to move the foot quickly from one pedal to the other. Others have a sensory loss in their feet, so their foot may slip off the pedal. (See Adaptive Devices on page 16 for suggestions about ways special equipment may help.)
Fatigue clearly affects driving. "A lot of people decide not to drive when they're feeling fatigued or when, as many say, they're having a `bad day.' They simply choose not to go out," Dr. Schultheis said. She suggests planning ahead. "Look at the coming week, and spread out chores, errands, and appointments so you don't get fatigued by driving all over town on one or two days."
Heat may also affect driving. "If I get overheated, my vision goes blotto," said John Babbo, who was diagnosed with MS in 1977. For other people, heat triggers fatigue.
"If your MS is heat-sensitive and it gets hot outside or you've just taken a hot bath or shower, symptoms may flare," explained Dr. Balcer, "so don't drive soon after getting overheated. Always take a cold drink or ice along with you to stay cool. And turn on the air conditioning."
Driving requires processing many pieces of information simultaneously. Imagine you are approaching a major intersection where several traffic signs indicate different routes. You are in the left lane when you realize you must get into the right lane in order to take the road you want. Your brain is processing many things at once. Your eyes are on the road ahead; you' re watching other vehicles; you're steering; you're braking or accelerating; you' re malting a decision about which road to take; and you're turning on your signal.
Add to this several distractions: The car radio is on; your children are chattering in the back seat; a new traffic sign appears up ahead. You must scan this whole environment, making appropriate decisions. This involves processing lots of information all at once.
A person with MS may find that it takes longer to absorb, digest, and sort out the important information in order to make quick decisions. Response time has two aspects, Dr. DeLuca pointed out: the physical part (how long it physically takes to turn the steering wheel and swerve away from an oncoming car) and the cognitive part (how effectively a person can process high-speed incoming information). "Processing speed is separate from visual acuity. It's important to distinguish between a visual and cognitive problem, as they call for different treatments."
Memory loss may also affect driving. "We hear a lot of `I get lost.' This might be poor memory or it might be visual perception because people don't recognize where they are, particularly when going someplace for the first time," Dr. DeLuca said.
He recommends a neuropsychological evaluation to determine the degree of cognitive problems. "If the evaluation shows that there are significant problems, one might also want to have a comprehensive driving evaluation. Unfortunately, there are only a handful of such programs around the country." He suggests locating one through a major rehab institution or hospital. The nearest Society office will have information about any major centers nearby as well as referrals to occupational therapists and other rehab professionals in your area.
Support from professionals and family members
"A lot of people practice their own restraints, without doctors' knowledge or input," Dr. DeLuca said. "People with MS may limit or stop driving because they know their abilities aren't what they were, even though their doctors say it's okay for them to drive. A lot of that goes on. Other people may be reluctant to mention their driving problems to their doctors because they think they'll lose this privilege."
Dr. DeLuca urges people with MS to take charge of the situation for themselves. The risk of losing one's driver's license is much bigger if problems are not faced and treated. "To consider the safety issues and keep your license--talk to professionals," he said.
"Family members need to know that both the cognitive and the physical changes of MS can affect driving. They need to listen to the person with MS who is probably saying two things at once: `I'm having some problems driving,' and `I don't want to lose my license; I'm fine.'" Safe driving may be a real possibility once problems are identified and dealt with.
Dr. Schultheis thinks it takes teamwork. "Demands vary from one family to another, but together, family, friends, doctors, and other specialists can often find solutions that allow the person with MS disabilities to continue driving safely within limits or with adaptations."
Adaptive devices, modifications, and a trick or two
Basics in any car
Physical therapist Susan Kushner, an associate professor at Slippery Rock University's Graduate School of Physical Therapy, offers these basic points:
* When selecting a car, consider four-door models because they have shorter and lighter doors that are easier to push open than two-door models. Consider the seats are they too low or too high? How easy are they to adjust? Vinyl or leather seats are easier to slide on than upholstered seats. Or wear a pair of "swishy" fabric slacks (like nylon running pants) to make sliding in and out easier.
* Opt for a tilt steering wheel. It makes getting in and out less difficult. "You need leverage to heave-ho if you're sunk low in the seat," Ms. Kushner said. "You can use the wheel as a grab bar when it's tilted to a lower position. It gives you leverage pulling and pivoting yourself out of the seat."
* If you use a wheelchair, keep a transfer board handy and secure it to the chair so you can shimmy in and out of the driver's seat. If people help you transfer, don't let them risk hurting their backs in pivoting you in and out--use the transfer board.
* If heat bothers you, make sure the car has an adequate air conditioner.
* In winter, keep a small container (like a margarine tub) of rock salt or ice-melt in the car. Open the window and scatter it on icy walks or driveways before you get out of the car.
A modified vehicle
Many drivers with MS use modified vehicles and adaptive equipment. Costs vary greatly. A spinner knob that helps when two-handed steering is difficult costs about $75. A new vehicle completely modified with adaptive equipment--hand controls for accelerator and brake, mechanical lifts for wheelchair or scooter, wheelchair tie-downs, steering devices and extensions, low-effort brakes, and a drop floor can cost from $20,000 to $80,000, according to the U.S. Department of Transportation's National Highway Traffic Safety Administration. An occupational therapist is often the best guide to individual solutions.
ABLEDATA is a national database of assistive devices, how they work, and where to get them. Call 1-800-227-0216; or log onto <www.abledata.com>. PROJECT LINK connects people to assistive product information. Call 1-877-770-7303. Both services offer independent information.
Most major automobile manufacturers offer some financial assistance for assistive equipment on new vehicles. Audi, Volkswagen, Ford, General Motors, Saturn, and DaimlerChrysler have reimbursement or rebate programs. Most range up to $1,000. Ask your automobile dealer.
Some state vocational rehabilitation programs or insurance policies will cover equipment and vehicle modifications. And ask a tax consultant about sales tax exemptions on equipment purchases and whether such costs qualify for tax deduction as medical expenses.
Once modifications are made, training and driving evaluation are required to stay on the road comfortably and safely.
Safely behind the wheel
Steve McCarthy's earliest MS symptoms appeared in 1992, but his driving challenges really began in the last 18 months. The 47-year-old president of an environmental services company in Pittsburgh said, "The worst part of driving is the stop and go in city traffic because I get fatigue in my legs. And on a long trip, not being able to stretch is a problem, as I also have some muscle spasticity.
"It's extremely important for both safety and comfort to keep your car well maintained, if it seems harder to brake, you might think it's a symptom of your MS, but it could really be the brakes," Mr. McCarthy advised.
When Mr. McCarthy needs to rent a car for business trips, he asks if they offer vehicles with hand controls. He advises being proactive. "Ask car rental companies in advance for leather or vinyl seats rather than plush ones; tell them the air conditioning has to be good, and ask in advance for any special modifications."
John Babbo, 50, was diagnosed with MS in 1977. "I probably shouldn't have been driving without hand controls then. I had trouble with my legs. I'd have to lift my leg with my hand and throw it on the brake."
A teacher at Bremerton Community College in Washington, he first saw portable hand controls on TV in 1981. "They were collapsible," he recalls, "and could be used on any car with automatic transmission." Costing about $200 then, they resembled a T-bar that sat in his lap with two rods, one leading to the brake pedal and the other to a sleeve that fit over the gas pedal.
"You accelerate by pushing with your thumb and apply the brakes by pushing down with your left hand," he said. His first set of portable controls eventually wore out, but a machinist friend made him another.
Mr. Babbo, who is 6'4", prefers portable hand controls because they're collapsible and lightweight. He can use them on rental cars as well as in his own vehicle. These days he also uses a wheelchair because he has poor balance.
"People tend to think of a wheelchair as the kind that's used in nursing homes. I have a super-light 23-pound chair that I can lift and put in the back of my Ford Explorer. Anything that can conserve my energy and help me get around more easily and comfortably improves my quality of life," he said.
Several organizations can provide driver training and useful information about adaptive equipment and vehicle modifications:
The American Automobile Association (AAA) sponsors driver improvement courses for disabled drivers and publishes The Disabled Driver's Mobility Guide for $7.95 plus $3 shipping and handling. Contact your local AAA club or the national headquarters:
* American Automobile Association 1000 AAA Drive Heathrow, FL 32746-5063 Phone: 407-444-7961
The Department of Veterans Affairs has established standards for various types of adaptive equipment and vehicle modifications. It offers reimbursements and driver training through its hospital network to persons eligible for VA services. Contact your local VA office or the national office at:
* Department of Veterans Affairs Prosthetic and Sensory Aids Service 810 Vermont Avenue Washington, DC 20420 Phone: 202-273-8515
The National Mobility Equipment Dealers Association (NMEDA), an organization of adaptive equipment manufacturers and installers, offers a newsletter and a National Service Network for consumers. NMEDA dealers follow a set of national standards to improve the quality and safety of mobility adaptations. Contact:
* National Mobility Equipment Dealers Association 11211 N. Nebraska Avenue, Suite A-5 Tampa, FL 33612 Toll-free number: 1-800-833-0427
The Association for Driver Rehabilitation Specialists (ADED) can help you locate a qualified driving evaluator in your area; it maintains a database of certified driver rehabilitation specialists throughout the country.
* Association for Driver Rehabilitation Specialists P.O. Box 49 Edgerton, WI 53534 Phone: 608-884-8833 www.driver-ed.org
You also can gather helpful information from your National MS Society chapter and from your state's vocational rehabilitation agency. State rehabilitation agencies can also be good sources of information about adaptive equipment installers in your area.
Martha Jablow's last contribution to InsideMS was a feature on memory and problem solving in the Spring 2000 issue.
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|Title Annotation:||multiple sclerosis|
|Article Type:||Cover Story|
|Date:||Mar 22, 2001|
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