If you or a loved one have been diagnosed with multiple sclerosis, you have already begun to experience how this autoimmune disorder can alter your life. It can be painful, frustrating, and even debilitating. Its progressive and unpredictable nature means you are probably not only concerned about your future but also about how you will function on a day to day basis. You may fear being confined to a wheelchair and losing your independence. But for most suffers of MS, despite the difficulty of living with the disease, they never become completely disabled. This means that even if you suffer some physical, visual or cognitive deficits from MS, there is still a strong likelihood that you will be able to get behind the wheel and drive.
What is multiple sclerosis?
MS is a very unpredictable disease that causes varying but increasingly worsening health problems. It is caused when T cells (a type of white blood cell) mistakenly attack the cells that produce myelin, a fatty material that forms protective sheaths around nerve cells. When these cells are attacked, they form scar tissue, which can inhibit the function of the underlying nerve. Over time, these attacks cause more and more damage, and symptoms become progressively worse.
People usually first become aware that they have MS sometime between the ages of 20 and 40. One of the first things they may notice is changes in their vision. They may also begin experiencing symptoms such as tingling, numbness, pain, or weakness in their limbs. There may be fatigue, confusion, difficulty focusing, bowel and bladder problems, and depression. Over time the symptoms can worsen to the point where the victim is unable to stand or has difficulty grasping things, and they can become confined to a wheelchair. Despite the drastic reduction in quality of life, studies have shown that MS does not generally affect people’s lifespan.
Multiple sclerosis can take one of four forms. The most common of these is relapsing-remitting MS (RRMS). It comes in bouts in which there is an intense increase in symptoms followed by a reduction, with a plateau of mild deficits left behind. This relapse can last months to years before the next bout. With each bout, the residual deficits left behind increase.
Secondary progressive MS (SPMS) is similar to RRMS but tends to have more of a steady progression instead of a plateau between bouts, and there are fewer large gaps of time in between bouts.
Primary Progressive MS (PPMS) lacks the sudden bouts of increased symptoms that RRMS and SPMS have, and instead is marked by a continuous increase in symptoms with no breaks.
The final form of MS is Progressive Relapsing MS (PRMS). It is similar to PPMS in that it continuously progresses but has bouts of drastically increased progression that can lead to severe disability much quicker than the other forms.
There is no cure for MS, but there are medications for the relapsing forms that can decrease the frequency and severity of bouts. Research also suggests that diet, exercise, and vitamin supplements including B and D vitamins can help to minimize symptoms.
How can MS affect driving?
Studies have shown that people with MS have a 300% greater chance of getting in a car accident than healthy drivers. The nature of their symptoms can make many of the tasks of driving very demanding. It is complicated by the unpredictability of their symptoms, which may be non-existent in the morning, but flare up later in the day. In addition, many people with MS take medication to help manage their symptoms, and some of them, like muscle relaxants, can lead to drowsiness or decreased coordination.
How MS affects a driver’s cognitive abilities
People with MS may feel a number of cognitive effects. They may find themselves more easily confused or disoriented, or they may forget what they were doing or where they were going. They may have short-term memory loss. It may be harder to stay focused on individual tasks and handling multiple tasks can be overwhelming. They may forget how to do simple things, like changing radio stations or rolling down windows.
How MS affects a driver’s physical abilities
Those with MS may experience a hard time getting in and out of the car, problems with coordination, problems with the muscles, such as cramps, stiffness, weakness, or spasms that can make it harder to use the controls. Increased fatigue is also common. In severe cases, individuals may also suffer seizures or lose consciousness unexpectedly. Decreased sensation can also make it difficult for drivers to know if they are properly gripping the steering wheel or if they have shut their door all the way. As MS progresses, it can leave people wheelchair-bound, but often still with some degree of functionality in their arms and legs. This means it may still be possible for them to operate a vehicle with adaptive devices.
How MS affects a driver’s visual abilities
A person with MS may find that they suffer from blind spots, blurred vision, double vision, and even the loss of their ability to see color. They may have difficulty differentiating between shades of color, which can make reading road signs a challenge.
What can I do at home to be in better shape for driving with MS?
You can start by keeping an eye on your health. MS symptoms can get worse when you are sick, so even if you feel fine to drive normally, it may not be a wise idea when you are under the weather. It is also good to make sure that you are getting adequate sleep and exercise and are eating healthy. No diet is proven to drastically alter MS symptoms, but they may affect your general health, which can contribute to how you experience your MS. You should speak with your healthcare provider about what would be best in your situation.
Who determines if I am no longer fit to drive?
In some cases, a person with MS may feel so uncomfortable with their ability to drive that they choose on their own to give it up. Other times, their loved ones or healthcare provider may be concerned that it is no longer safe for them to be behind the wheel.
In Connecticut, there are no laws that mandate medical professionals report patients who may be unable to drive due to medical conditions. The state does, however, encourage physicians, law enforcement, or concerned family members to submit documents to the Department of Motor Vehicles identifying such individuals and triggering a process that would suspend their driver’s license until such a time as they could be tested and found safe to drive. If you are concerned about the driving of someone you know with MS, these forms can be found on the State of Connecticut DMV website at https://www.ct.gov/dmv/cwp/view.asp?a=818&q=245036. Forms can be submitted anonymously or with the submitter identified, and documents state that “No civil action may be brought against someone who provides such a report in good faith.”
If you are a healthcare provider and are concerned that a patient’s driver’s license should be suspended until further evaluated, you should refer them to a Certified Driver Rehabilitation Specialist (CDRS) for a Comprehensive Clinical Assessment, and if possible, an actual Driving Assessment. You can find a CDRS in your area by searching the directory on the Association for Driver Rehabilitation Specialists website, www.aded.net. You should also help the patient create some sort of transportation plan for the time until they have completed their evaluation. This might mean helping them make arrangements with friends or family or looking into ride services like Uber and Lyft or other forms of public and specialty transit.
What does Next Street look for when assessing me for driving with MS?
There are several areas our CDRS will look at when you come in for an evaluation. They will check your vision, including your acuity, peripheral vision, and how well you are able to scan your surroundings. It is important to make sure that you can not only see, but properly identify and react to hazards. Your flexibility, strength, and coordination will also be assessed. The CDRS will evaluate to see how well you can use the controls and if you are able to safely stay between the lines and change lanes. You will be assessed to see how well you can get yourself and any equipment you need in and out of a vehicle. They will also check your cognitive abilities to ensure that you have adequate judgment, awareness, and ability to remember and follow traffic laws. Finally, you will be given a behind-the-wheel driving test.
Possible driving outcome
Based on our evaluation, we will help you determine which course of action is best for your unique circumstances.
Your physical, cognitive, and visual abilities may still be intact enough that you can continue driving as normal. It might still be a good idea, though, to plan ahead for how you will handle certain situations, such as unexpected flare-ups that occur while out and about. It may also be worth taking a defensive driving course to sharpen your skills.
Because MS can cause vision problems and difficulty with concentration, it may no longer be safe for you to drive at night or in bad weather. You may also be restricted from driving on the freeway or in other high-traffic settings where the risk of an accident is greater.
Adaptive driving devices
Every MS patient is different and may need different equipment to operate a vehicle. We will assess you to see which options work best for you. You may no longer be able to use your legs to operate the gas and brakes, so your vehicle may need to be retrofitted with either mechanical or digital hand controls. If you have trouble gripping and turning the wheel, we may prescribe a spinner knob to help you turn. In some cases, you may need a joystick or fully digital controls for both steering and speed control. You may be wheelchair-bound and unable to transfer to the driver’s seat on your own, in which case you will need a lockdown system to mount your chair in the vehicle, and possibly some sort of lift or ramp system for to get your chair in and out of the vehicle. If you have vision problems or difficulty turning your head, you may also require additional or larger mirrors.
After you receive new adaptive equipment, you will also need training on how to safely drive with this equipment. Once you have completed this and passed any DMV driving tests, you will be free to hit the road.
Retirement from driving
In some rare cases, MS can progress to the point where driving is no longer safe. When this happens, it does not mean you have to completely surrender your independence. We will work with you to create a transportation plan, which may involve riding with loved ones or with specialty transit services. Regardless of where you are at, we will work with you to keep your life as mobile as possible.