To Drive or Not to Drive with Multiple Sclerosis

A friend of mine recently had orthopedic surgery and was unable to drive for four weeks. "A whole month!" she complained to me. "Can you even imagine that?!?" In fact, I can imagine that. I did not drive much at all for about seven years.
About a year before I was diagnosed with MS, I became terrified of driving. I would get in the car and my hands would start shaking. I always made sure I knew exactly which route I would take and, many miles in advance, I would start dreading the known "challenges," such as traffic circles or places where other cars would merge with my lane. When I would notice a car switching lanes 500 feet ahead, I would flinch and be tempted to slam on the brakes. I was a mess. People kept telling me my driving anxiety had psychological roots, and that I needed to keep practicing or my fear would keep me from living my life.
Eventually, some other symptoms led to my MS diagnosis. Still, no one mentioned that my driving might be impaired. It was only after lots of reading that I put the pieces together and figured out that MS-related cognitive issues were behind the terror that I felt when I drove. Looking back, it all makes sense – if a person doesn’t feel as able to concentrate, react quickly, see the road as clearly, process the incoming stimuli as quickly, it could certainly lead to fear of driving.
So, I basically stopped driving any distance beyond a mile or so from my home. In fact, my husband and I chose a house within walking distance to a grocery store and the school that our future children would attend. Often, there would be whole months when I only got behind the wheel one or two times. For the first four years of my daughters' lives, I would not drive the car with them in it.
Today, things are better. I am much more comfortable driving and drive quite a bit. However, I still do not go on highways or to unfamiliar places.
Here are some rules I follow when deciding whether I am "roadworthy" and how to be safe behind the wheel:
Do a "gut check." This is the most important thing that I can do before I get in the driver's seat. I do a little inventory of how I’m feeling that day. I picture myself on a busy road and if the thought makes me uncomfortable because I might be feeling fatigued or experiencing other symptoms, I don't drive. Period. I remind myself that no matter how inconvenient it might be to cancel plans or miss an appointment while I wait for a time when I feel better or someone else can drive me, safety is the most important thing.
Get a professional evaluation. If you’re unsure about your driving abilities, look into a Certified Driving Rehabilitation Specialist. They can assess your physical and cognitive abilities, and recommend adaptions to your car that will help keep you driving. Visit the Association for Driving Rehabilitation Specialists. Occupational Therapists can also help assess how much symptoms are affecting your driving.
Avoid hectic places and times of day. Even when I feel great and fully roadworthy, I do not drive when and where I know traffic will be bad and people will be in a rush.
Stick with one car.Everyone has one car that we feel the most comfortable driving. I really recommend trying to only drive that car, rather than switching cars with your spouse or roommate frequently. We just don't need the extra challenge of trying to remember how to operate the wipers or locate other controls.
Concentrate. Turn off the music. Ask the kids to talk quietly. Do NOT talk on your cell phone (even with hands-free technology). When you drive, drive. Make a point of consciously noting traffic lights and stop signs and what other drivers are doing.  Frankly, I wish more people would tune in a little more when they are driving, MS or not.
Ask for help.Because I did not drive for so long, I got used to relying on other people (usually my husband, but also friends) to get where I needed to go. I would strategically plan out errands and appointments so that they were as convenient as possible for my "chauffeurs." While this can be a big hassle for someone used to having full freedom to go anywhere, it is hugely important if you are not comfortable driving. Make sure that you acknowledge those helping you.
Bottom Line:
Despite the urgings of well-meaning loved ones and their conviction that I just needed to "keep practicing," I know that driving is something that I can do some days and cannot do on others. Inability or anxiety around driving can be caused by many MS-related symptoms, such as fatigue, cognitive dysfunction that slows down reaction time and executive processing, vision issues and sensory symptoms that make it difficult to feel the pedals with your feet. Again, lacking confidence around driving is not "all in your head" – these are very real symptoms that can negatively impact driving ability and ultimately, safety.
Many people look at driving as one of the most important areas of independence in their lives, and it can be scary to think about giving up that lifeline. Don’t let fear keep you from speaking up about your concerns. Now more than ever, there are vehicle modification options. A professional evaluation and the use of recommended adaptive equipment can increase your safety and comfort, and promote independence for as long as it remains safe for you to drive.

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Julie Stachowiak, PhD

Julie is the author of the Multiple Sclerosis Manifesto, the winner of the 2009 ForeWord Book of the Year Award in the Health Category. She is an epidemiologist who is also a person living with MS, Julie has an in-depth understanding about current research and scientific developments around MS. She also has first-hand knowledge of the frustrations and anxiety surrounding the disease, as she had MS for at least 15 years before receiving a diagnosis in 2003 and has had several relapses since her diagnosis.