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Driving and Multiple Sclerosis; Independence

I can remember wanting nothing more than to get my driver’s license. I studied, I went to driver’s school, I studied some more, I practiced whenever I could and I passed the test on my first try. Freedom! Getting a driver’s license and a car is probably the first real feeling of independence for youth in the USA. All of a sudden the things you can do in life multiply greatly! You can get around on your own! No begging Mom and Dad for a ride! It is great!

Of coarse as you get older priorities change. Sure you may still want to visit a friend but now you have to worry about driving to school, your job, the store, or maybe even taking the kids to school. Soon driving just becomes another necessary task of life like paying the bills, especially if you live somewhere like me where the nearest anything is 2 miles away and there are no cabs or reliable forms of public transportation. Many people cannot even imagine life without a vehicle! Especially with a disability like MS! How can it be done? How is it even possible to maintain a life?


But that is not what this article is about. No, right now I am focused on the freedom aspect of driving. The feeling of independence. You see that is a difficult feeling to maintain when you are living with Multiple Sclerosis. Independence. There are many simple tasks that people with MS may not be able to do on their own anymore and for some of us, asking for help is really difficult (some of us may not even have anyone to ask for help) but we often do what we have to do. But despite all the things I have to ask help for, I would say for me, the most difficult loss of independence (mentally/emotionally speaking) has been the times I have lost the ability to safely drive. Maybe that sounds stupid but I know I am not alone because I see people all the time fighting to not give up the ability to drive. People who should not even be thinking about getting behind the wheel! I have lost so many forms of independence to MS, so when it starts to take away my ability to drive it almost feels tragic. So I do understand.

You see I think we (after time) take driving for granted. As I sit here writing this article I have lost so much of my vision to oscillopsia that I know I cannot safely drive right now. It’s killing me! I feel like I am stuck in the house unable to get anything done! I can’t get myself to my appointments or even pick up my prescriptions! Forget visiting friends or attending any “extracurricular events”! It turns into a logistical nightmare just trying to find someone who can take time off of work and take me somewhere I need to be like an infusion! The clinic to do blood work! Or as I mentioned a minute ago, simply picking up a prescription down the street. All the things that are just part of my life, mundane things that never felt like a big deal at all, are now such huge endeavors. Life is no longer on my time. I like to leave at a certain time and be places early but now it’s like I am a child. If I need to be somewhere I will get there when my ride gets me there. I am on their time. I am at their mercy. Just like when I was a child.

Maybe that is why it is so hard? I no longer can make a choice. That is what freedom is, the ability to make your own choices and that freedom is now gone. As much as it kills me though I have to be smart and accept that I cannot drive right now because I refuse to be responsible for hurting someone else just because I stubbornly want to drive. I know I developed this discipline after watching someone suffer a stroke and still insist he can drive when he clearly should not. I told myself I would never be like that. I think it shows more strength in a person when they can admit they need help then when they try to do something on their own that they should not be doing putting the lives of innocent people and themselves at risk. A car is a 2-ton weapon and I think people forget that. Even the smallest and lightest of cars can crush someone and change their life forever if they don’t die. That being said, I wouldn’t walk around shooting a gun if I was unable to clearly see so I won’t drive a car either. It’s difficult but it’s necessary.

I plan to later write about how I personally feel you should determine whether or not you should be driving based on the many different factors that can hinder the safety of driving but for now, I am curious, how do you decide if you can drive or not?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Marcus
    3 years ago

    Wow!This post is spot on! I do okay on most surface streets and Freeways are a piece of cake, but parking lots! Forget about it! With cars backing out, pedestrians, shopping carts, vehicles driving on the side of you or the opposite way. At times I want to hold my Handicap Placard up and say, “Do you see this?!”

  • @masbrautigam
    4 years ago

    Yes I often think is this my last time behind my wheel.When I do drive I still think this,but I have only lost vision in my right eye which I think is 80% I can see or maybe 70% it has not been tested to confirm after my first attack.I know that I can see well enough to drive and know that at night I can’t due to the lights.long distances not good either which will be another issue when I arrive in Australia this week.little drives were no problem in France,even with those crazy drivers!I have had one mayor car accident and I was in the backseat in my teens,and I was 2 months in hospital.years later another one and both by drunk drivers,so I will never risk anyone or myself.What I would like to know is when everyone renews their license,how do they pass their test with these issues and do they need to do a test?I need to replace my license for an Australian one but not sure if I need or will pass the test?you wrote when to stop driving….I honestly don’t know as many factors pop up:/

  • Sarawithms
    4 years ago

    Wow, I just came here to post and thought I was on Shiftms website…and its FRIDAY…I’m not supposed to be THIS confused on a FRIDAY, lol. I wanted to say it sucks to be afraid to drive, I get so dizzy I feel like I’m gonna pass out, only when I come to a stop, but feeling like I’m gonna pass out ANYTIME I am driving scares me, I don’t want to be a danger on the road, I haven’t driven in a year and I am waiting waiting waiting for the Social Security (could that name be any more asinine?) more like the ANTI-social security dept. to approve my disability – 3 yrs+ so far including a humiliating “hearing” that felt like a trial that included a “vocational expert” who said that there are several jobs here in Dallas, tx – folding paper – that I could work at for 6 hrs a day with a 20 minute break every hour and make 52,000.00 a year,(still haven’t FOUND WHERE THAT JOB IS). My Neurologist, PCP and therapist all pushed me to apply for disability, I fought it for 10 yrs,(diagnosed in 2004)my MRI’s show my brain is COVERED IN LESIONS and TWO BLACK HOLES, plus lesions on my spine. Meanwhile I haven’t worked since 2011 and have lost everything of value that I owned trying to survive – jewelry – bye bye, antiques – bye bye, work clothes, bye bye, everything I had of value has been sold or pawned to survive. I feel like I might as well have a HUGE WHEEL like on Wheel of Fortune that has all the different ways I hurt – bones feel like they are on fire, feels like a sword going through my feet, feels like there is a lightning cloud floating over me with random pain strikes and every morning I could spin it and it would make more sense than me trying to explain my pain. I am ashamed that a few days a week I pray for a heart attack or aneurism because the despair I feel from struggling to scrounge enough money to survive (my husband works as much overtime as he can get and he is out in the heat and about as wore down as I am)am wrestling with the depression and feelings of worthlessness are a full time job. This year I have been so angry that I don’t like myself. Everything makes me rage almost. I TRY to be positive and believe that it can get better, but wow, it is really tough. I was not a member of this site but somehow – seriously I have no idea how I got here and that kind of freaks me out – I wound up here and felt such a splash in the face of….belonging, that I wanted to comment and as you have seen, had a LOT to get off my chest. thank you for being here, Sara

  • @masbrautigam
    4 years ago

    Wow lots to splash out lol.i find these blogs great and there is another one I am on but I only follow when I need it,as otherwise my Facebook is full of MS news.family and friends don’t always understand and that’s why these sites are great,especially this one as they have blogs often and their subjects are great and great writers:) I hope you stay on these sites 🙂

  • Kelly McNamara moderator
    4 years ago

    Hi Sara! Thanks for sharing your story and welcome to the site! – Kelly, Community Manager

  • Marcia
    4 years ago

    Hi. I understand that sadness, and I hope you get better God willing. For me, when I get a relapse my cognition goes out of whack I don’t like to drive because I go out in front of traffic. My eyes show me it’s not safe to go, but my brain says it’s ok, and I’ll go. So after two episodes of that, I’ve decided not to drive during an exacerbation. And it stinks because I have to drive my son back and forth to school. I know that if I ever lose the ability to drive it’s really gonna kill me because riding a car for me is like riding a horse. There’s so much excitement with it lol.

  • Sophiasmyth
    4 years ago

    I stopped driving 29 months ago. It was not a big decision to make when my brain did not want to keep two ideas together at one time and my short term memory was obviously on the fritz…I Did Not like making this decision but the thought of my selfish behavior maybe causing another harm…. Well there was really no other decision to make.
    I might add that the last 6mo I have felt more confident with my mental capacities to get behind the wheel again but now my mobility is such that I feel uncomfortable without another person with me anyway.

  • kevin
    4 years ago

    don’t know if this is relevant as I am in Britain had a truck licence and now have nothing I do think I am safe to drive just now I know some day I will not but I get a lot of freedom just now and it makes me think good to get out and meet people doctor says am ok but DVLA have decided otherwise

  • Fuzzy
    4 years ago

    Last month I got an evaluation (by an OT) to determine first if it is safe for me to continue driving and secondly to recommend what if any adaptive controls I might have installed to help me drive safely. The OT reported that it is still safe for me to continue driving without adaptations, but she said I would benefit from having them installed. But there are still two obstacles.

    First the cost of having the controls installed is not insignificant. To add a left side gas pedal and a knob on my steering wheel along with the required drivers training will come to around $1,500. And insurance won’t cover any of that because “driving is not a medical necessity”.

    The second obstacle was the show stopper for me. Once I get adaptive controls installed, I need a behind the wheel test at the DMV and then they would issue a new license. The license that says I have proven I can safely drive with adaptive controls also states that I may not drive a vehicle without said controls. I’m not ready to cross that bridge.

    Different controls would cost more or less for others or perhaps for me when it becomes time that I need to take this step. And laws regarding the restriction on the license may be different in other states. I’m just not ready to give up the option to drive other cars or rent a car when traveling.

  • Jfbeard
    4 years ago

    I am 47 and I was just diagnosed on May 26 th with MS. I have had symptoms for almost 3 months and I haven’t been able to drive since the first of May. I am hoping the medication will allow me to be able to drive again. My first appointment with MS clinic is in a few weeks.

  • ritamarie
    4 years ago

    It didn’t take me long at all to decide not to drive, I started hitting curbs… Big curbs. After that I knew I needed to stop But Man I didn’t want to give up my independence. My car sits in the driveway and seems to taught me. …sigh… But it was the right choice. I can’t drive now. My meds are way to strong. I have lost the ability to do it. I couldn’t even dare think I may hurt someone by trying to drive. Thank God I have a wonderful husband that takes me where ever I need to go.

  • Matt Allen G author
    4 years ago

    I bought a new car in January and as luck would have it, my vision took a dump by the end of the month! So my car sits in the driveway undriven and I am making payments on it hoping I will get my vision back. UGH! It would not be so bad if I had someone to drive me places but both my parents work full time and I am single so…. Yeah….

  • Stephanie Dodds
    4 years ago

    I have recently made the decision to stop driving. It came after I was unable to stop my car at a stop sign without using my left arm to move my leg, and force my right foot down on the brake. I decided that day, someone else’s life is just not worth sacrificing for my desire to drive. Yes, it’s a little bit of an issue to ask for a ride, but seeing as I am too exhausted to go places anyway, it’s not really that bad! =) I just learned to take life as it comes at me. I’m so much happier with my life that way.

  • Tonia
    5 years ago

    Matt I completely agree with you. Last August I was involved in a terrible accident that totaled my car, and could have killed me. I really hadn’t been driving much in 2014, but my son, who generally takes me where I need to go, had went out of town for his 21st birthday. I drove to the bank on Friday, to Starbuck’s on Saturday, and Sunday I was going to CVS. I knew I was pushing it, but I went anyway. Lost my car. but not my life and no one else was hurt, thank goodness. Needless to say, I haven’t driven since.

  • Tonia
    5 years ago

    Matt it was a “big” wake-up call, but I have always been so independent all my life. It took this near death experience for me to get a “clue”.

  • Matt Allen G author
    5 years ago

    That is a scare wake up call I suppose (or it would be for me I mean)

  • north-star
    5 years ago

    Like Cathy1959 I now drive with hand controls, my legs are not reliable, I had exactly the same issues. I had an evaluation done to see if I had other problems and luckily I did not. I would be devastated if I had vision problems.

    I also want to encourage people who have issues with their legs to try hand controls. I learned how to drive all over again from a wonderful occupational therapist. She had me on the freeway (at stop and go rush hour– relatively safe, I realized later) in two lessons.

    The biggest problems I had were with the DMV. I had let my license lapse and they gave me a one time, 30-day learners permit. Ridiculous, since I had to be tested by a specialist, which took more than 30 days to set up.

    I like the idea of a self-driving car. I want one if they’re ever perfected!

  • Matt Allen G author
    5 years ago

    Honestly, there is nothing wrong with my legs that hinder my ability to drive but I would LOVE to learn to drive the all hands controls! Lol I am just weird I suppose. Self driving cars, ever see the Google car?

  • mmcclaskey
    5 years ago

    Thanks Matt, thinking about your example made me remember I gave up hunting a few years before driving.

  • Matt Allen G author
    5 years ago

    so you LITERALLY will not walk around with a gun. Well, double good but sucks…

  • Cathy1959
    5 years ago

    Thanks Matt for being so honest. I have had MS for over 30 years. About 5 years ago my legs stopped working the way they used to. I felt like I had 50 lb. weights wrapped around my ankles. I especially had a problem lifting my right leg. I found that when I was driving in traffic, taking my foot from the gas to the brake would wear me out until I eventually was holding the steering wheel with my left hand and putting my right hand under my right knee and physically lifting my leg to go from gas to brake. On long trips, I would pull over and take an hour break, recharge my battery and continue my trip. It got worse 3 years ago & I did not feel comfortable being on the road because if someone cut me off I would not be able to step on the brake fast enough to prevent myself from running into them. I called the MS LI chapter and they helped me get hand controls for my car. It took a while to get used to, but I cannot ever imagine driving without them. I am no longer a danger to others and I still have my independence.

  • Fuzzy
    4 years ago

    Ercox, the numbers I got at my recent evaluation were about $150 for the spinner knob on the steering wheel and about $850 for a gas pedal on the left side (my good leg). In addition, there was a minimum of 4 hrs behind-the-wheel training (about $140/hr) with the OT. I don’t know what other financial help you may have access to but I was told that medical insurance won’t cover any of this cost “because driving a car is not a medical necessity”.

  • Matt Allen G author
    4 years ago

    Wow. Glad you got the controls, “ERCOX” (comment below) was asking about pricing but I can’t reply. Seems you can only reply ONCE here. Lame. Hope this is SEEN!

  • Ercox
    4 years ago

    I haven’t gotten to that point of hand controls but out of curiosity is this expensive? Is there help out there for this financially? I have 3 kids that are 5,9,and 14,and I couldn’t imagine what I would do if things got worse…

  • Matt Allen G author
    5 years ago

    I have driven with a friend who has MS and had hand controls put in for the same reason. Pretty cool!

  • Minnie60
    5 years ago

    I stopped driving in the fall of 2006, our home was for sale and I needed to leave for a showing. I jumped in my s10 Blazer, went to go out of my driveway and my legs did not want to lift. I was devastated, I drove just to the neighbors straight across from my driveway and had my husband retrieve me after work. I have not driven since, I could not be so selfish to endanger others. I felt like part of me died, and still from time to time experience great sadness to my confinement. It hurts a lot when I ask my husband to bring me somewhere for the first time in over a month and he says he is tired, or don’t feel like it. MS is very isolating much of the time, yes freedom should never be taken for granted. I was only 45. Now i have a jazzy chair and HC Van, but at the mercy of another’s whim or mood to take me anywhere and then with limtits or time constraints. If you are in the predicament try to surround yourself with positive things it does lessen the grief and isolated feeling a bit. Reality can stink sometimes.

  • Matt Allen G author
    5 years ago

    It is VERY hard but like you, I can’t be so selfish to put others at risk. If I got in my car I could PHYSICALLY drive, but I can’t see well so my reaction time would not be great….

  • rslattum
    5 years ago

    How do I decide if I can drive or not? I’m struggling with how to answer this. I can count on one hand how many times I’ve driven in the last year. I think the furthest was maybe 5 miles away. Everything seems to close in on me when I’m driving. There’s too much stimulation surrounding me. Turning my head to look right, then left, then right again puts me in a frenzy. Add turning and looking over my shoulder-please! I’ve recently had my yearly eye exam and my vision has worsened, pretty significantly in one eye. I’m going to blame that on turning 50 this year. I would do anything to be able to do exactly what you mentioned-run to pick up two items I need for dinner, a prescription, the post office, pick up my kids from school, practice, etc. But when I think about what my reaction might be when I need to think quick while driving, I would feel tremendous guilt if my reaction brought harm to anyone. So, I’m not driving…maybe someday…I’m hopeful, but have doubts if I ever will again. I’m looking forward to your follow-up on this topic.

  • Matt Allen G author
    5 years ago

    It’s good that you can realize your limits and even more so, understand the potential consequences to OTHERS. That is what makes me mad; people who can’t see that.

  • Laura Kolaczkowski
    5 years ago

    Thank you Matt. For what? For stepping up and talking about this important information, of course. But also for being wise and taking yourself from behind the wheel for now. best, Laura

  • Matt Allen G author
    5 years ago

    It’s an issue that really drives me insane and I still have so much I want/need to say but I am not sure how just yet.

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