Driving is synonymous with freedom and independence for many of us. With a set of keys and our GPS app of choice, we can go where we want, whenever we want. In the United States—where public transportation is often limited, and about 88% of people own a car, according to a 2015 Pew Research Center survey—the ability to drive (or not) can seriously impact a person’s income and quality of life. This includes people with multiple sclerosis (MS)—and the condition can make driving a bit more complicated.
People with MS may have a higher risk of getting into a car accident when driving, according to recent research. This aligns with research finding that MS patients needed treatment at emergency rooms after road traffic accidents more often than non-MS patients. And while many people with MS have no issue driving, the progression of the disease can cause challenges behind the wheel. As a result, many states require disclosure of medical conditions that could impair driving, such as MS.
The good news? Help is available if driving proves problematic because of your MS. Let’s take a look at how MS symptoms can impact driving, and how you (or a loved one) can stay safe on the road.
How MS Affects Driving
MS is an autoimmune disease of the central nervous system that impacts the brain, spinal cord, and optic nerves. In this condition, the protective layer around the nerve fibers in the brain and spinal cord—called myelin—is damaged, which interrupts signals to and from the brain. The result is the many varied symptoms of MS, including fatigue, weakness, and vision issues, all of which can lead to challenges while driving.
MS symptoms can also vary from person to person, and even from day to day, flaring up at certain times, points out Kathy Zackowski, Ph.D., an occupational therapist and associate vice president of research at the National MS Society in New York City. During MS attacks or relapses, symptoms can worsen and then later improve. These flare-ups can affect strength, sensation, vision, fatigue, and cognition, Zackowski notes. MS-specific issues that can impact driving include:
Fatigue
Some 80% of people with MS experience fatigue, and they tend to describe it as not just sleepiness, but total exhaustion. “They liken it to moving through mud or thinking through a fog,” Zackowski explains. When driving, fatigue can dull reflexes and attention, and it can worsen for some MS patients as the day goes on, posing a challenge to the evening commute. “Fatigue makes it hard to make split-second decisions and hard to stay attentive at the wheel,” Zackowski says.
Chronic Pain
Some patients with MS have unrelenting pain in areas like their neck, back and legs, which can make driving uncomfortable, Dr. Jassam points out, especially for longer rides. “Sitting in the vehicle for prolonged time might be difficult in certain positions,” he says.
Cognitive Issues
Problems with impaired cognition are common and very real for some MS patients, according to the Cleveland Clinic. Memory loss and slowed information processing speed can negatively impact driving, Zackowski says. “This can look like 1) forgetting where you are going, 2) confusion about where you are and how to get to your destination, and 3) poor concentration leading to issues with tending to multiple tasks at once, like turning the windshield wipers on and braking to avoid hitting a pedestrian,” she explains.
Effects of Medication
Certain medications such as antidepressants, pain medications, and anxiolytics can affect your ability to think clearly and react quickly, Dr. Jassam says. These medications are sometimes prescribed to MS patients. Other medications used in MS care, like muscle relaxants, can cause drowsiness or coordination issues.
Sensation Changes
Altered sensations, including numbness, burning, a feeling of your skin crawling, or tightness can all be common with MS, according to the Multiple Sclerosis Trust. “Sensation is critical [in driving], especially proprioception, also called kinesthesia. This is the ability of your brain to know where your body [is] in space without looking—think, pushing the gas pedal while steering the car,” Zackowski explains.
Spasticity
Muscle stiffness and spasms, known as spasticity, are common in MS and can impact driving, especially in high-speed situations, Dr. Jassam says.
Weakness
Muscle weakness, including in the legs, can be a common issue with MS. As Zackowski points out, to drive, you need strength in ways you might not think—including getting into and out of the car, staying upright in the seat, pushing the gas/brake with the right pressure to stop and go (at the right time), and controlling the steering wheel.
Vision Problems
For one in five people with MS, one of the earliest symptoms is known as optic neuritis, or inflammation of the nerve of the eye. Both this and double vision can impair driving with MS, Dr. Jassam says. Other MS-related vision problems that can make driving difficult or dangerous include blind spots, blurry vision, and loss of the ability to see color.
Do You Need a Driving Evaluation?
How do you know if MS is affecting your driving? First, you might have practical indications that you’re experiencing issues operating a vehicle, even if your MS symptoms are mild or manageable, Zackowski says. Those can include:
Having car crashes or near misses
Receiving moving violations
Learning that others are afraid to drive with you or have concerns about your driving
Experiencing problems with your vision
Noticing a slowed reaction time
Noticing a change in mood, including problems with controlling anger (which could lead to road rage)
Falling more often when walking
If these (or other issues) are causing concerns, MS patients can have a private fitness to drive evaluation. Typically conducted by a driver rehabilitation specialist (often, an occupational therapist with specialized training) at driver rehabilitation clinics in medical centers and community-based clinics, this evaluation can help you determine if it’s safe to keep driving—or if additional driving training, vehicle modifications, or suspending/stopping driving is needed.
It’s not typically covered by insurance, so you would have to pay out-of-pocket. “Driving evaluations and driving training can cost several hundred dollars,” Zackowski notes. “However, this is the one way to get measurable information about a person’s safety behind the wheel and to identify how best to modify a vehicle to improve safety.”
Private driving evaluations are done by specialists, meaning they’re typically more detailed than a standard Department of Motor Vehicles (DMV) road test. The evaluation can be two to three hours long, and it’s usually divided into two parts:
Part 1: Office-Based Assessment. Performed first, this part consists of questions about your medical and driving history, and an evaluation of your common MS symptoms, Zackowski says. It will also assess your functional ability (like strength, range of motion, coordination, etc.), vision, and cognitive abilities, according to the National MS Society’s brochure on driving with MS. If you pass this portion of the test, you move on to the second and final part.
Part 2: Behind-the-wheel evaluation. For this segment, you’ll typically drive a faculty-provided vehicle in a low-traffic area before advancing to higher traffic areas. The driving portion will evaluate your ability to:
Control the car in different levels of traffic
React quickly
Follow the rules of the road
Identify hazards
Use your judgment for decision making
Multi-task (driving in itself is a multi-tasking activity)
Your awareness of safety features in the car and driving situations will also be evaluated.
Next Steps After an Evaluation
After a private driving evaluation, you and your doctor will look at the results and figure out what to do next for your driving needs.
In more than 10% of U.S. states, including California where Dr. Jassam practices, doctors are required to report to the state’s DMV if their patient has a medical or mental condition that might impact their ability to drive safely. Other states with similar mandatory reporting include Delaware, Nevada, New Jersey, Oregon, and Pennsylvania. Some 50% of remaining states don’t have mandatory reporting for physicians, but many encourage it.
For Dr. Jassam’s MS patients with concerning symptoms for driving, a full cognitive neuropsychological evaluation and physical and occupational therapy assessment help determine their abilities. If it turns out that driving is impaired for a particular MS patient, he informs the California DMV. The DMV uses a list of factors to decide if a person should have restrictions on driving or their driver’s license suspended or revoked for medical reasons, including (but not limited to) the nature and extent of a medical condition and number of miles a person tends to drive.
Each state’s laws and requirements may vary, so check your state’s DMV for more information.
How You Can Modify Your Car for MS
One thing you can do to make driving safer with MS is modify or adapt your car. Here is some equipment that Zackowski says can help:
Disabled parking placard
Hand control for the steering wheel
Hand controls for the gas/brake
High-tech options for controlling the gas/brake and steering wheel
Lifts for moving a wheelchair into a vehicle
Modifications to mirrors by increasing their size
Specially-equipped vans to allow for wheelchair use by the driver
Special seating to help with transfers and trunk control
“This equipment will need to be fitted to the person’s car by a trained professional or certified mobility equipment dealer to assure safety,” Zackowski says. “And the person with MS will need training to be sure they know how to safely use the new equipment.”
The cost to adapt your car can be high. Complex changes, like hand controls, can cost about $1,000, while buying a new car modified with adapted equipment can run you between $20,000 to $80,000, according to the National Highway Traffic Safety Administration, though you may be able to get funding for modifications. For help locating a new or used accessible vehicle to rent or buy, The National MS Society offers resources. For more assistance, you can call the National MS Society MS Navigator service at 1-800-344-4867.
Alternatives When Driving Isn’t an Option
If your MS symptoms have advanced to the point where driving is unsafe, it’s important to recognize the situation for what it is and seek help from your doctor and other healthcare professionals to stay safe.
“Since driving is such an important indication of independence, coming to terms with this change may take some time, and talking with a therapist or your healthcare provider about this transition and the rationale for it is often helpful,” Zackowski says.
In the meantime, driving services can help get you around, Dr. Jassam says. Ride-sharing apps (think Uber and Lyft) and taxis are good options, if they’re in the budget. If the cost of ride-sharing is prohibitive, experts recommend asking family or friends or seeking out volunteer drivers (including at local community centers, places of worship, or service organizations).
Another option is a paratransit service, if you qualify for it, Zackowski says. Part of the Americans with Disabilities Act (ADA) offerings since 1990, these van-and-taxi programs are available when public transport isn’t viable for someone with disabilities. Reach out to the National Aging and Disability Transportation Center (NADTC) for help in finding accessible transit at 866-983-3222 or email co*****@na***.org.
How Long Can You Have MS and Still Drive?
Many people who have MS never experience issues with driving. With a myriad of disease modifying treatments available, many people are able to halt the progression of their MS and manage the symptoms before driving becomes an issue. That said, according to Zackowski, even people who have mild symptoms during the first five to 10 years of their MS diagnosis can experience some accumulation of disability.
Since driving is such an important part of being an independent adult, staying ahead of potentially troubling MS symptoms is key to preserving that skill, Dr. Jassam says.
“In my experience, addressing problems with [MS] earlier, and not neglecting them, might prevent them from worsening,” he says. “A small issue left untreated might eventually affect your ability to drive.” You’ll want to bring up bothersome symptoms with your medical team as they develop. They can help you find solutions, so you can continue to get around safely.
Find a provider near you and start getting the maternity care you need
