Driving with Multiple Sclerosis: Can I? Should I?
David Orange, NARCOMS Staff Writer with contributions from John Brockington, MD, Associate Professor and Director, Division of General Neurology at the University of Alabama at Birmingham
Few things in life give such a sense of freedom as the ability to drive a car—to go where one wants on your own time and for your own reasons. But we don’t just drive for fun or good feelings. For many people in the US, with far-flung rural areas and many cities with little or no public transit, driving is necessary to handle the daily responsibilities of life. This is especially true for people with disabilities or illnesses such as multiple sclerosis (MS). Yet, with over 34,000 people killed in car accidents in the US in 2008 , driving is also one of the most dangerous things any of us do. True, the majority of people with MS can drive safely, but acute MS symptoms—such as vision problems, muscle weakness, or spasticity—can sometimes make driving difficult. Many people with MS simply avoid driving during exacerbations. Some with chronic symptoms voluntarily give up driving, while others lose their licenses following a dangerous incident. This article examines the risks and challenges of driving with MS, ways to prolong and improve mobility, and how to know when to consider giving up driving. Finally, we consider some alternatives to driving.
Challenges of Driving with MS
Perhaps the most important physical challenge of driving with MS is the range of visual effects, including double vision, loss of color recognition, deterioration of peripheral vision, and poor coordination. Decreased sensitivity of the feet and legs or a diminished sense of where the arms and legs are relative to the body, can cause mistakes with the gas and brake pedals. Stiffness, numbness, nerve pain, and muscle weakness can make it hard to press those pedals, turn a steering wheel. or even to turn your head. Bowel and bladder problems can complicate long-distance travel. Compounding all this is the energy required to control the vehicle and maintain concentration on the road, which can cause extreme fatigue and exacerbate many MS symptoms. In addition, heat sensitivity affects many people with MS. Overheating can worsen fatigue and other symptoms, such as emotional balance, coordination, and muscle strength. As a result of these factors, MS can definitely affect driving performance. Fortunately, these problems can be predicted and controlled for by paying attention to your own condition and planning activities within those parameters. A GPS and a good air conditioner can be very helpful, but careful attention to your condition and performance are vital.
Not all MS symptoms that may affect driving are physical. Emotional and cognitive changes can cause tremendous stress without your being able to recognize them. Physical symptoms, of course, are almost always noticeable to the driver and can stimulate some concern about your own driving ability, but cognitive change can be so subtle that it may be only from friends, caregivers, or family members that the person with MS patient the idea that his or her driving skills have diminished. Cognitive changes may seriously slow decision-making skills and alter judgment. They can also make it difficult to remember where you were going, how to get there, or how to get home. That level of confusion can easily lead to emotional challenges or accidents. This type of cognitive effects of MS may be a more important factor in driving accidents than physical symptoms.
A final factor that must not be overlooked is medication. Several of the treatments for spasticity and neuropathic pain, such as baclofen, Zanaflex (tizanidine), Klonopin (clonazepam), and Neurontin (gabapentin), can all impair people’s judgment and reaction times due to sedation. So driving while on these medications could be very hazardous.
What Are the Options?
Some people with relapsing-remitting MS can simply avoid driving during exacerbations and return to their normal routine after the episode passes. For most people with MS, an ordinary car will be fine. People who have severe chronic symptoms may be unable to drive an ordinary automobile. Fortunately, there are a number of very effective vehicle modifications to compensate for whatever physical deficiencies they may have. Special mirrors can help people who can’t turn their heads very well. Reduced-effort steering and braking systems can help those with muscles weakness, and hand controls can compensate for people who have serious weakness or numbness of the lower extremities. Even those who depend on wheelchairs or scooters can find help through vehicle modifications such as lifts to carry the wheelchair or scooter, ramps to allow them to drive into the vehicle, and devices to help the driver transfer from the mobility device to the driver’s seat. Some vehicles are specially built to allow the driver to lock a wheelchair into the driver’s position and drive the vehicle from the wheelchair.
Various manufacturers make and market driver assistance devices under the approval of the National Highway Traffic Safety Administration (NHTSA). All make similar products, but each has some special and unique features. These modifications can allow people with MS to safely to operate a vehicle long after they thought they had lost that ability. If the modifications are necessary for the person with MS to find employment and commute to and from work, he or she may be able to get them and the training to use them through a combination of federal and state funding. Contact your state department of vocational rehabilitation for specifics for your own state.
But How Can You Know?
How is one to know all this? How can a person evaluate his or her own driving ability and determine what equipment is needed? The short but very reliable answer is that you cannot evaluate your own driving ability. In fact, as stated above, you may be completely unaware of some of the most dangerous conditions you may have—cognitive changes so subtle that only close friends, family, or caregivers even recognize them. The best thing for people with MS who have concerns about driving is to get a professional evaluation of driving ability. This includes visual perception, functional ability, reaction time, and behind-the-wheel (BTW) performance. At the same time, it’s a good idea to ask your neurologist for a clinical evaluation of cognitive skills through standard clinical tests as BTW evaluations focus mostly on physical ability and are not the best way to discover cognitive deficits or evaluate their influence on driving ability.
The Association for Driver Rehabilitation Specialists (ADED) is a nonprofit organization that supports professionals in the fields of driver education and training as well as modification of transportation equipment for people with disabilities. ADED works through education and the dissemination of information. It is the sole organization for certifying Driver Rehabilitation Specialists to work with people who are disabled or handicapped. Their website (www.aded.net) provides fact sheets on various medical conditions and their effects on driving ability, along with special considerations for people with specific conditions. They also provide a directory of Certified Driver Rehabilitation Specialists (CDRS) on their website.
For most people with MS, a referral to a CDRS will likely come from their neurologist or ophthalmologist, but those who need employment may apply to their state department of rehabilitation services for vocational rehabilitation. Funded in part by the Federal Rehabilitation Services Administration, with matching funds from the states, rehab services may provide testing, rehabilitation, education, vehicle modification, and training in their use for people with MS or other conditions. Generally, anyone may apply for state rehabilitation services and be referred to a rehabilitation counselor, who will determine the nature and severity of their disability. The applicant will then be referred to a CDRS who will determine his or her driving abilities and needs, and tailor a selection of vehicle modifications and training in how to use them. The person with MS may then obtain a license, which will specifically list any restrictions and the particular vehicle modifications required. The driver then may drive only under those requirements. The ultimate goal is for people to remain independent and to extend their years of safe mobility.
But What if You Cannot Drive at All?
Of course, for some people, even extensive vehicle modifications or specially designed vehicles will not enable them to drive. What then? Traditionally, people unable to drive due to disabilities have relied on informal networks of family and friends to get them to caregivers, doctor’s appointments, shopping. and other destinations. More recently, federal, state, and local governmental agencies have become part of that network of services. The Americans with Disabilities Act (ADA), signed into law in 1990, guarantees disabled people equal employment opportunities and access to any entity open to the public. This includes buses and trains. In many places, this results in special transit services to accommodate users of scooters and wheelchairs. However, with poor transit in many areas, these services may not present much help. In some cases, paratransit services will pick up riders at their homes if they reside very near an existing bus route, but they will take the rider only to locations equally near an existing route. For specific information for your area, contact your local transit authority. For more general information, the Federal Transit Administration (FTA) maintains a toll-free assistance line at (888) 466-4511, or via e-mail at FTA.ADAAssistance@dot.gov.
For the majority of people with MS, the disease is no obstacle to safe driving. However, exacerbations and progress of the disease may result in serious driving problems. Further, the person with MS may not be able to recognize that gradual development and may not understand the increasing danger in continuing to drive a motor vehicle. Thus, it is important to get an evaluation of your driving abilities and limitations, and to learn and adhere to the legal restrictions and access the help that is available from family, friends, and governmental sources.