Tuesday, July 17, 2012

To Drive or Not to Drive with Multiple Sclerosis

Writer, ms.about.com 

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.


  1. This is a huge issue at times!

  2. Driving is actually what I do best. I have troubles, fatigue and pain with walking or biking. But driving is actually pretty easy for me despite extensive damage in the brain from MS. I consider myself lucky in that regard. My only problem is that my medication use because of MS symptoms may end up with my drivers license not being renewed (I have to be checked up every two years, because of my extensive medication)

  3. This comment has been removed by the author.

  4. I have anxiety attacks whenever I drive. I decided the stress is not worth it. I decided to ask my husband to drive me where I want to go. He agreed and I just have to make sure that what I need to do does not conflict with what he needs to do. It takes some work but I am lucky enough that he is willing to do this.

  5. You said Exactly how it is for me. IN fact, I've had 2 MS flares this year, and both times I realized I was having a flare because I couldn't judge the distance between me and a car, or me and a parking space. I got in 2 accidents in 3 months. I just got my insurance premiums, and they are now $1800/6 mos, and I am terrified about what this means for the future...will I have to give up driving for 5 years? Can we just switch insurance companies to get a lower rate and suck up the rest? Should I get an older car that I don't have to carry so much insurance on? It's a scary time for me right now. I don't want to give up my independence if I don't have to.

  6. I don't know your whole situation, so take this with a grain of salt. First off, your MS sounds very active. Have you considered changing or starting a maintenance medication? What about steroids in the interim? I have MS as well and hate to think of anyone else suffering through so many attacks.
    Secondly, if you can't or shouldn't drive, if at all possible, don't! If you can get the MS under control, I would expect driving to become easier as well. It took me two years, about a dozen flares and finally getting the right medication, then rehab to get back to driving. But, I finally feel comfortable driving. Sounds like you are in much better shape than I was.
    Good luck!

  7. I live in a very small town where driving isn't really necessary, unless one is going supermarket shopping. There are even ways to get around that.

    I drove until about 4 years ago at which time the pain in my hands, back, legs, feet and my uncertain vision and slowing reflexes convinced me to sell my car and get an electric vehicle just for use in town. I absolutely love it! For further distances I depend on my DH, who took early retirement so he could more readily and easily be available to take me to more distant medical appts and treatments. He also has the time to help more around the house, do the shopping, and even do home improvements. We're both happy with this whole new lifestyle.

    I occasionally miss driving, but not often. I keep my licence up to date, just in case.

    Happy driving . . . or not!

  8. I wish someone warned me, it wasnt till after i was in 2 collisions in 3 wks (totaled both) did my family and i realize i shouldn't drive alot and sometimes not at all. it never even dawned on me till then.

  9. Why is this even a question? Driving isn't a right, it's a responsibility, a BIG one. If you're impaired - by alcohol;, by MS, by fatigue - driving is criminal. It's a very real possibility that you may injure or kill someone. Get evaluated professionally. Have a friend observe you both from the passenger seat and following behind you. This is NOT a game.

    I've had to report patients that were no longer either neurologically or mucularly fit to drive. It often came as a relief to them (some were upset initially.) Get involved with groups [ushing for more and better public transportation. MS or not, the eventuality is that we will all need to stop driving at some point.

    Do I drive? No. Ms and neurological damage have seen to that. I may not see well any longer, but I haven't lost my sense of responsibility and my common sense. I made what I feel is the best choice for myself and others who could be affected.

  10. Like you did, I limit my driving to areas I know well. I have to. I've blinked and lost much of my vision, which could be disastrous on a busy street. Best to be restricted to areas where I can easily pull off the road and pull out my cell phone for emergency assistance.

    But I HAVE found over the years that I'm filled with anxiety when my husband drives on an expressway (or anyone, but he's usually 'my driver'), and that never used to bother me. He really is an excellent driver and there is no reason for me to be anxious, but I'm sure we're going to go headlong into the car ahead of us or that the semi two lanes over is about to slide atop us. Constantly "hitting the brakes" from the passenger seat and my unwarranted bursts of fear end up making my husband upset, as it would me if positions were reversed.

    I just find that for long trips, it's best to have an eReader, electronic game, or something to busy myself and keep my eyes off the road so that my husband can drive in peace. In the meantime, I'll show him this story so that he'll know I'm not judging his skill. I'm simply cognitively ... distorted.

  11. I was diagnosed in 2008, I was having problem's with my leg strength so I traded my F150 supercrew for a fully loaded Sion it was sooo pretty!!!! then just 3 mo later my neurologist said no more driving OH my (big sad face}. So I started working hard to get my strength back so I could drive again. Then here comes dear old MS and now I have lost 85% vision in my rt eye. I never thought at 35 I would have to hand my new car keys to to my 16yr old son to be the the second driver of the household, but I know now that sometimes that is what is more important. Trust my there were tears a sometimes still are but I would rather everybody else on the roads with me be safe then me be happy being independent for that 10 or 30 minute period.

  12. Wow, as being newly diagnosed yesterday (have had symptoms since 2008, mostly in my left arm-I drive mostly with just my right arm) this is something that has not even crossed my mind. Fortunately for me, at least right now, I am right handed so having my left arm not quite as useful is not that big a deal. However I did have 1 flare hit my right arm for a short time. This does worry me though, I don't know what I'd do if I was not able to drive. Fortunately I still have about 80% use of my left arm, it just gets tired easily from holding on to the steering wheel. Lets hope it stays that way and my right arm stays 100%...

  13. I almost cried when I read this. It is so my story. I always heard "o you can do it" etc.... not from my Husband , but everyone else. I even heard, "but you need to be WILLING to pick up the kids".....Live my life and see how YOU feel about getting behind the wheel of a potential weapon that could so tragically end lives, because of FOOLISH pride. I don't drive,,,,,end of story!

  14. you are lucky you still went on to have kids after your diagnosis, mostly you are lucky for having a husband who stood by you and supported you. we take so many things in life for granted, i am really glad i can still drive everywhere, but i can barely walk...

  15. This scares me... I drive professionally for a living. I have been lucky and only had "what my doctor called a minor " flair. I actually stopped driving at the time. The company I work for does not know about my Ms because I fear they will fire me, however me and my doctor has talked about me driving and he said it was okay to do being as I currently only have pain from the Ms... I am Also constantly watching for the signs of a return attack. Lucky I can take a leave of absence from my company for "personal " reasons. lastly I know for a fact I am not alone when it comes to being a professional driver with Ms...

  16. ...it never occured to me that my ms and not anxiety was causing my driving issues. thought provoking for me, thanks

  17. Ever since I was diagnosed I noticed that I can no longer judge my distances. I have gotten into two minor fender benders where I scrapes someone else's car just turning. My boyfriend thinks it is just that I can't drive. And it makes me feel so insecure. I never related it to my MS until I read this. Thank you. It is nice to not feel so alone.

  18. Ever since I was diagnosed I noticed that I can no longer judge my distances. I have gotten into two minor fender benders where I scrapes someone else's car just turning. My boyfriend thinks it is just that I can't drive. And it makes me feel so insecure. I never related it to my MS until I read this. Thank you. It is nice to not feel so alone.

  19. wow, after all these years wrestling with this on/off again issue and hardly ever being able to describe it to anyone. sincerely appreciate you writing/sharing this with others.

    for years doctors just said it was "anxiety". my body just wasn't buying into that. then came the diagnosis of MS and so many "weird symptoms" began to find their place in the puzzle.