Driving and MS

Before I was diagnosed with MS, I developed a fear of driving. I would get very nervous even before I got behind the wheel. As I inched along in my car at speeds well below the speed limit, it would take all my resolve not to slam on the brakes if a car 200 feet ahead of me changed lanes. My biggest horror was a traffic circle I would have to get through on the route from my home to almost anywhere. By the time I reached my destination, I would be shaking and drenched with sweat. When I spoke to my doctor about it, he told me to practice more, which was the last thing that I wanted to do.
 
Shortly after that, strange sensations in my legs led to my diagnosis of MS. My neurologist agreed that my anxiety about driving was most likely related to cognitive effects of MS and told me not to drive if it made me uncomfortable. Except for rare trips to a nearby grocery store, I did not drive again for almost 8 years.
 
While it is well-established that many visual, sensory, motor and cognitive symptoms that are part of MS can interfere with safe driving, there are no established guidelines as to who is fit to drive. As long as a person can pass a road test, they are declared “roadworthy” and sent off with a driver’s license.
 
I was not surprised to hear in an interesting presentation at ECTRIMS 2013 that drivers with MS are over three times more likely to be in a car accident  than the general population.
 
In studies conducted on a driving simulator, it was shown that, compared to people without MS, people with MS tend to:
  • Drive faster
  • Have a much higher variation of speed under constant conditions
  • Move around the lane much more
  • Poorly prioritize tasks, meaning they cannot focus on driving if they are trying to do more than one thing or are distracted 
In many cases, people with MS self-regulate their driving. Research has shown that people with “mild” MS drive about as much as people without MS, about 2.7 trips per day. In comparison, people with “moderate” MS (EDSS 3.5-6.0) only drive an average of 1.5 trips per day and rely much more on public transportation or other people to drive them.
 
In the presentation that I attended, Hannes Devos presented an intervention that he and his research team at Georgia Regents University have studied to help people with MS “learn” to drive again.
 
Dr. Devos had 36 people with MS participate in a 5-week training program, where they spent an hour each week in a driving simulator. The program focused on six critical driving skills, tailored for the individual participants:
  • Lane positioning
  • Brake reaction time
  • Passing other cars
  • Road sign recognition
  • Hazard perception (figuring out if it was safe to pass an accident or obstacle)
  • Anticipation (assessing what a car parked on the side of the road might do) 
After participation in the program, 5 of the 7 people who had “failed” the initial assessment were deemed fit to drive again and all showed improvement. Dr. Devos reported that his group is working on a larger study of the intervention, so that it may be available more broadly to people with MS in the future.
 
Although it was a tremendous burden on my husband and others when I stopped driving, I am certain that I kept myself and my family safer with this decision, as well as other people on the road. Today I feel much more comfortable and am driving again on a limited basis. I do not drive on highways or on unfamiliar routes, and before I start the car, I remind myself to focus on driving and only driving, putting away my phone or any other potential distractions. On days when I feel at all “fuzzy-headed” or nervous about driving, I simply don’t do it, relying on the good will of others (and taxis) to get me to where I want to go.
 
I urge all of you to take a hard look at your driving and decide whether having a backup transport plan in place might be a good idea.

 
**If you’re unsure about your driving abilities, you may want to 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.**
Tags Research, Symptoms      2 Appreciate this
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Julie

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.

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    29 Comments

  • Tracy   Oct 3, 2013 11:17 AM
    Thank you for this. I now know I am not alone and there are reasons behind the way I act when I drive.
  • Amy   Oct 3, 2013 11:27 AM
    My main symptom is double vision and I have not driven for 6 months.
    I see singular if I wear a patch but my depth perception is affected, not to mention a large blind spot. I hate losing that independence and having to be driven everywhere.
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    Victoria50  Oct 3, 2013 11:27 AM
    I prefer not to drive because I can tell when I'm too "foggy". I do better when I don't have the distraction of passengers and try to keep my trips short like to the grocery store. I was diagnosed with RRMS in October 2012.
    Great article.
  • Yvette   Oct 3, 2013 11:37 AM
    I had a very bad relapse 1-1/2 ago. I was medication free 5 years with no relapses however now I am on 10 pills a day including BG-12 to slow down the progression. Dealing with SEVERE fatigue since June 2012, the medication my doctors give me are controlled substances, it makes me feel uneasy to drive. I'm not one that likes to inconvenience others to drive me around. Twice now driving I have had a scare. I will not drive with my son anymore and I drive only when it is a very short distance.

    It's hard for people in your life to understand that their are things you can no longer do being on medication and having illness for life. MS makes you feel less confident and constantly seconding guessing things. The hardest part is letting my loved ones down with my lack of contributing the way I used to before illness.

    Don't MS medicated and drive, better to be safe than SORRY!
    ydress
  • jennifer   Oct 3, 2013 11:48 AM
    I have ppms (primary progressive ms) and very little use of the right side of my body, so far the left side seems ok, most times I can't even turn the key. Any suggestions?
  • Darcy   Oct 3, 2013 11:54 AM
    I thought I was the only one. I would take off and drive an 8 hr trip alone but now I only drive to Dr. appointments and to store. If it is gonna take me more than 10 minutes to get to my destination I freak and just stay home or one of my Girls will take me. But I am a terribly side seat driver. My girls and girlfriend Hate driving me anywhere. My girls always say mom get in the backseat and close your eyes.lol My Dr wont give anything for anxiety so before I ride with anyone I drink a few beers to help me relax. The not driving issue is about to put me over the edge, I do not like asking for help or a ride to get somewhere!!
  • Emily Sandlin   Oct 3, 2013 11:57 AM
    When my doctor said I could no longer work he said that I could no longer drive. And I am glad for that. I keep getting foggy while driving and I did not want to cause an accident
  • Avatar
    Quaker  Oct 3, 2013 12:03 PM
    On simple trips I found myself getting lost alot. Which was not only imbarassing but scary. And this is writen by a man with 27 years of law enforcement.
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    yatestm  Oct 3, 2013 12:06 PM
    When my wife and I drive, it is usually her behind the wheel or she is side seat driving. Prior to my diagnosis she would get upset and scared how I would drift lanes or almost miss stop lights and stop signs when I was talking. I would get irritated because I don't have the problem when I am alone. The diagnosis was a relief.
  • Sarah   Oct 3, 2013 12:22 PM
    I've stopped driving at night, due to visual changes and fatigue...and sadly I've had to switch to only driving automatics, after years of loving my old 5 speeds. Can't trust my left leg and the clutch anymore.
  • Sharon Alvord   Oct 3, 2013 12:42 PM
    I suddenly kept having accidents. I would find myself going off the road or going up a bank. Odd thing is I loved to drive and did very well driving since I learned. I do have other medical issues and things became very stressful. I was not tested for why I suddenly would pass out or why I kept falling down. I would pass out for days. I lived alone and still do. I would gladly accept help to go to the store but I do not have a support system. I know lots of people but they do not drive. What finally was the culprit for me was seizures. I'm diagnosed with a seizure disorder. The more plaques that I got the worse my falls would be. I finally had an EMG. I also had 3 plus strokes in less than a year. The EMG was given because during a stay in the hospital a nurse saw I was actively having a seizure. So if you are unsure I would be checked for seizures also.
  • Sally   Oct 3, 2013 12:44 PM
    My reaction time is poor and night vision terrible so I limit driving. I get lost in places where I've lived for my entire life. I used to enjoy driving. Some days I know I shouldn't be behind the wheel. I'm just not aware enough.
  • Sally   Oct 3, 2013 12:55 PM
    I too stopped driving after a relapse 3 years ago, but I never started again. My doctor was worried about my cognitive function and my slow decision making process (yellow light, stop? Don't stop? Oops too late!) . I do wish I had kept my license current as there are days I feel I could take care of errands close to home. But it is what it is. I am happy that I don't have to worry about harming others though I do have some resentment over loss of independence. Having my husband take me shopping is like hunting with the game warden ;)
  • Rose   Oct 3, 2013 1:05 PM
    Since my diagnosis, I've had periods of time when I was suddenly fixated on the fear that I could have a seizure due to the location of lesions on my brain. (though I know of no solid evidence that this could cause a seizure.) I don't know where the fear or idea came from.

    But what this fear did to me was make me afraid to drive for a little while just after I got my diagnosis.

    I'm pretty much over it now, but from time to time it creeps up and I feel fearful while driving. Somehow, I've managed to push those thoughts away enough not to interfere on a regular basis.
  • Patricia Huey   Oct 3, 2013 2:00 PM
    I am not alone, thank goodness! I fear driving but mostly at night. My vision has started to get weird as well especially if its raining hard. Think I need to reassess myself in this regard.
  • Joan   Oct 3, 2013 2:56 PM
    The following is a link to a Facebook page where you can sign up to get a free or almost free hand control for your car. This is legit! The hand control device is named Halo and is designed by a gentleman who is himself handicapped. You can do a search for Halo hand control and do your own homework. http://givethehalo.org/MS1/
    OR
    https://www.facebook.com/groups/MSandDriving/
  • Tina   Oct 3, 2013 4:55 PM
    Thank you for this post. People don't understand how difficult it is to drive, hope someone in my family reads this. Maybe it will help them understand how I feel when say I don't feel like driving.
  • participatewjoy   Oct 3, 2013 7:45 PM
    I had some driving issues when I was first diagnosed, I was also trying to teach my 16 year old how to drive at the same time. What a freak show!! I couldn't get in the car with him without slamming my foot into the floor and holding on for dear life because a car was 500 feet away, but it felt like they were right there. That has subsided though and I drive to work everyday. I'm not sure how I would manage if I couldn't still drive. I'm a single mom with 2 boys and I live in an area with horrible public transportation, plus in the summer it can get up to 118 degrees...
  • Debbie   Oct 3, 2013 11:41 PM
    I've been diagnosed with MS for the last 2 years. Optic Neuritis is really an issue for me. I have problems driving against bright lights, sunlight and such. Even with sunglasses, the reduction in color still makes it hard or impossible to drive. Recently I had to pull over to safety and have my daughter drive. I was driving against the sun setting and couldn't see at all. Something to do with the bright lights, and at night against oncoming traffic is just horrible. Just can't do it anymore. It is really hard to admit that. It just isn't worth putting other people at risk.
  • marina   Oct 6, 2013 4:49 AM
    I get nervous cause my right leg loves to go asleep or totally dead feeling down one side of leg and foot so when I drive I always have one hand on my right leg to push pedal and keep trying to get feeling back in legs and the fogginess sucks too as a result I only do limited in town driving, no highways or long trips
  • Avatar
    Quaker  Oct 6, 2013 1:59 PM
    Another day of not driving....I sit in the backseat; wife and daughter in the front.........how depressing is that? But it is safe! I see people look at me and probaly think, "another drunk who lost thier license.......Ha!
  • David   Oct 11, 2013 9:14 AM
    Good article and discussion.
  • sharon alvord   Oct 15, 2013 8:59 PM
    Im trying to find my former comment about driving and seizures.
  • Val   Oct 17, 2013 11:03 AM
    Driving is very important to me so when leg braces were added to my 'routine' because of toe drop, the therapists also recommended hand controls. What a gift! I no longer have to worry about whether my feet are going to cooperate when I drive. I also find it much less tiring physically.

    Thank you for the article!
  • Betty Robinson   Oct 17, 2013 1:53 PM
    I stopped driving shortly before being with MS. The drives to work, church, shopping are in the in the hands of family, friends and God. I am glad to hear from others.
  • Anybeth   Oct 17, 2013 3:24 PM
    I still drive, but some things have changed. When I was diagnosed, I had a small car with a manual transmission. I started to find driving harder, especially in heavy traffic -- so many things to pay attention to. As I developed significant mobility problems, I found getting the equipment in and out of my car so arduous it'd greatly limit my ability to go out on my own. I bought a PT Cruiser for its low bumper threshold and its ability to be converted, should I ever need that. I made sure my new vehicle had an automatic transmission (one less thing to pay attention to) and cruise control (so my speed wouldn't vary much on hour+ journeys). It also has excellent visibility but dark window tinting (which helps with my lack of mental filters). I still drive differently, but those things all help a lot. I don't drive for more than a couple hours and rarely more than around town. I'm careful of driving in heat. I don't make as quick of movements as I used to except to avoid impending accident. (I've never had an accident on the road.) I repeat to myself the color of an upcoming stoplight just to make sure I focus. I don't drive drowsy. If I've reason to doubt my driving abilities, I don't. I'm much more careful now, but I still love driving. I do get a little nervous the first couple times if I haven't driven in a while. Maybe most people would.
  • Amy   Oct 22, 2013 3:57 PM
    I am so grateful have to come across this topic and the comments others have made. I too have fears of driving, however since learning I have MS earlier this year some of my anxiety has lessoned. I limit my driving to work and back and errands. Thank you all so much for sharing, it helps so much.
  • Italian Girl   Mar 2, 2016 12:42 PM
    In 2014 & 2015 I experienced serious issues with safe driving. Right foot will jump back and forth on brake & gas pedal and finally would slide UNDER the brake pedal. Added gabapentin for numbness and now enrolled (!) in drivers education with an Occupational Therapist who is certified to teach HAND CONTROLS. Its very encouraging and if sight and cognition are stable I will try.
  • Lawrence   May 10, 2016 9:23 PM
    I am a 63 yr old white male with 5 years of PPMS. Try Cannabis and watch your Life come Back.