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Driving & MS: Realizing Potential Dangers

As I write this, it’s been about two weeks since a Staten Island woman, claiming to suffer from Multiple Sclerosis, mowed down and killed two young children in a crosswalk. She referenced her illness and said that a seizure was to blame for the incident. A similar incident happened just over a year ago, when a Brooklyn man suffered an MS-related spasm while driving and ended up killing someone in a similar fashion. These are two highly publicized incidents, however, I have no doubt there have been other ones that have not been as prominent in the news. These cases illustrate the very worst of what can occur when it comes to driving with Multiple Sclerosis. While they may not be the norm, there are certainly plenty of challenges when it comes to driving with our disease. Enough potential issues that, with the help of my doctor, I decided several years ago to turn in my keys. While it is hard to live without driving, I know it’s the right decision for me.

How I stopped

I essentially stopped driving around the time I was pushed onto disability. That probably makes sense to some people right? I can’t work, I can’t drive. Plenty of people on disability can still drive, but in my case, the same symptoms that affected my job performance also impacted my driving. My symptoms were making it harder and harder to drive without putting myself and others at extreme risk. It wasn’t a case of, “I’m on disability now, so I’m automatically unable to drive”, far from it. In fact, after being placed on disability, I continued to attempt to drive. I had plenty of near misses too. It wasn’t only spasms or seizures like the people in the stories above, but cognitive issues that were causing increasingly scary moments. Memory issues, like forgetting where I was and how to get where I was going were always common, but I began having issues with remembering and understanding how things work, what signs mean, which pedal does what, problems with my attention span, and difficulty with the speed at which everything was happening. I also began experiencing some extreme sensory overload while driving (and still do many times when I’m in a vehicle, which can make travel difficult).

Raising the issue with my doctor

It was a family member (all of these symptoms can also make attending a doctor’s visit alone very difficult, so I always have a family member or friend attend with me) who first mentioned, out of concern, “should he still be driving?” to my doctor. The doctor then began asking my thoughts on the matter and after some discussion, we decided, no, I probably shouldn’t be driving. He wouldn’t officially restrict me but that was under the promise that I be responsible and don’t drive. I have a long relationship with this physician and he trusts me to do the right thing. This was probably around four years ago at this point. Every once in a while, I will drive a couple miles, in the middle of the day, on a country road, to a friend’s place of work. Even then, my roommate checks me out in the morning and makes sure she agrees that I can do it. I no longer have a vehicle of my own, which makes it a lot less tempting to try driving. I do have to say, that I’m not sure my doctor would have discussed driving had my family member not brought it up. That’s a reminder that it’s often up to us to bring this discussion to the forefront.

It sucks

Not driving any more is extremely difficult, particularly where I live, which is a lot more rural than anywhere else I’ve lived. Living in a city and not driving is easy. In a lot of ways, a city can be a dream for someone who has disabilities. Public transportation, services like Uber and Lyft, and close proximity to places you need to go make urban living significantly more accessible than where I currently live. I am now very much at the mercy of my friends to get around. That’s not easy when you are someone that hates to rely on others (thankfully, Uber has had an increasing presence where I live and is making my life much easier). Not being able to drive (coupled with my stubbornness in accepting help) has had a profound effect on my independence and loneliness. I’ve really learned how much people take driving for granted. The ability to get up and go wherever you need to is just amazing. Seeing friends, buying groceries, going to the post office, or even taking your dog to the park – all of these things become difficult when you no longer drive.

Making the right decision

Despite the difficulties it’s brought, I know that not driving is the right decision. The unpredictable nature of MS, particularly at this stage of my life with it, makes it too dangerous. It’s easy to forget what can happen when we are behind the wheel and just how permanent the consequences can be when something goes wrong. At some point, having a discussion about driving with your health care professionals is important, but realize that you may have to initiate it. We have to be responsible about our disease, and sometimes that means asking questions that may have answers we don’t like.

Thanks for reading!

Devin

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Comments

  • Bayoubaby
    4 months ago

    Thanks for sharing. I love living in the country, but yes, it is much more isolating when your wheels are gone.

  • lcal
    1 year ago

    Devin thank you for a meaningful conversation. I was unable to drive at all for 11 years and it was during the time my children were all school age. It definitely sucked, but we did thing we otherwise never would have done such as watching the wonders of nature(a spider building a web was.very cool). 3 yrs starting tysabri I was able to drive about 20 minutes distance on a good day. Like you Devin, I live in the middle of no where and public transportation does not exist. I now ery seldom drive and when I do it down the st
    2 miles most. I believe that way too many ppl with all sorts of conditions drive when they know they shouldn’t and I personally don’t get that. I used to Love love driving
    But it is not worth someone’s life. I have actually found myself in the middle of intersections I’ve known my whole life because I don’t know what to do. I have way more than once stopped at a 4 way stop sign waiting for the light to turn green
    Lol. The feeling of thinking your missing cars turning in or out of roads is terrifying and I think that a mix of bad vision vs cognition. Accepting rides is difficult as I hate and always have hated being a passenger for lack of control and now sensory overload. Uuuuugghh. It definitely sucks but still BETTER SAFE THAN SORRY
    LISA

  • Monk
    1 year ago

    Glad you brought up this important issue. Here in Boston there was an accident where a driver with MS ran into a pizza parlor and killed several people. Every time it’s on tv my heart sinks, it’s horrible for the victims, their families, and the driver. Having MS is hard enough, but knowing you killed people must be unbearable. I made the decision a couple of years ago. It was hard but glad I did.

    I made the decision on my own but I understand there are organizations that will evaluate your driving and help advise.

  • potter
    1 year ago

    I have only had one time where I switched lanes in front of when I shouldn’t have. That day was 105 and even in a air conditioned car was was getting over heated. After that I would only run errands first thing in the morning on hot days. Even though that happened 5 years ago, I have reduced the amount of driving I do. My husband is retiring next October and I am going to let him drive and I will be the back seat driver. Trust me he needs one, I am a better driver than he his right now and agrees he need help. Denice

  • dmp103
    1 year ago

    I applaud your decision! I made the same one years ago when I went through a stop sign without stopping and endangered my passenger. Luckily, it was just a close call, but it was enough to make the decision.

    Yes, everyone is different! In my case, it was my MCI and not a physical symptom that caused my decision. Reflexes are very important when you’re operating a car!

  • Devin Garlit moderator author
    1 year ago

    Thank you dmp103! For those of us that have to make it, it’s an extremely tough decision!

  • cw
    1 year ago

    Every case of MS is different. You can’t say whether you can safely operate a vehicle based on someone else’s accident.

  • Devin Garlit moderator author
    1 year ago

    Hi cw, I’m pretty sure you didn’t read the entire article by that comment. While an accident is mentioned in the first paragraph, it goes on to talk about my experience and why I don’t drive, which is not based on someone else’s accident. The article even discusses how it’s important for individuals to talk to their health care professionals.

  • Nobu
    1 year ago

    I still drive with my car adapted with hand controls. I do not have seizures, have normal vision with corrective lenses, along with good upper body strength and control, and otherwise do fine. But I do understand how some symptoms can be a good reason to stop driving. I do tell people who ride with me is to keep the conversation to a minimum with me so I make sure I concentrate on driving. My legs are my main issue and my right leg is the weaker of the two so hand controls and hand control training made good sense. I have had MS since 2000, and walk with forearm crutches.

  • Devin Garlit moderator author
    1 year ago

    Thank you Nobu, I really should do a follow up about all of the different measures one can take to still drive. Like adapting your car based on your symptoms. Thanks so much for sharing that!

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