Abject fear of driving was my first "real" symptom of multiple sclerosis, which ultimately led to my diagnosis (albeit in a roundabout way).
It was weird, as most of these symptoms are - I would get in the car and immediately feel anxious. I would press on, forcing myself to go places, even though I was terrified the whole time. I felt like I was in a video game, even when there were few other cars on the road and the pace was slow. A car switching lanes 100 yards ahead of me would tempt me to slam on the brakes, as it seemed like a collision was inevitable with such "reckless" and erratic drivers on the road. Approaching a traffic circle would be a gut-clenching nightmare of trying to find an opening, waiting too long, finally speeding out in front of traffic as someone honked and yelled.
Everybody that I mentioned this to had a diagnosis and advice. "You are just stressed." No, I really wasn't (besides the driving experience itself). "You need more sleep." No, I was sleeping fine. "You just have to keep practicing." I had been driving for 20 years, so couldn't figure out what this one meant.
Once I got my MS diagnosis, about 6 months later, and learned a little more about this disease, things made a little more sense. I think what I was experiencing was a form of cognitive dysfunction, a slowing of information processing that made it difficult to integrate and make the hundreds of little microdecisions that are involved with driving.
These days, I might go for months without driving. That is hard, and I am basically dependent on my husband to help me get out-of-the-house things accomplished. However, there are also good times (driving-wise), where I will confidently navigate local streets (still no freeways for me) and feel like I am in control of my universe. There are also in-between times, where I find myself halfway to my destination, realizing that maybe this isn't ideal - during these times, I keep a running mental dialogue going, telling myself that a traffic light is coming up and not to slam on the brakes if someone slows down way up ahead of me.
Don't get me wrong - I do NOT drive if I think I am dangerous or if I feel the least bit anxious. Before I go out, I always ask myself how I am feeling and if it is a good idea to get behind the wheel. I allow myself to be disappointed, but proud of myself for my "maturity," if I decide that I have to stay home.
What about you? Do you drive? Do you ever feel anxious? Was there ever a specific event when you regretted driving? Have you stopped driving? Please, share your story in the comments section below.
Driving is one of the 1st things I gave up after my diagnosis. It is one of the most difficult things I can do during the day, and I avoid it if at all possible. I have driven small amounts here and there, but I have to laugh because I feel like the “little old lady behind the wheel.” (I just truned 40.) I get overwhelmed, have a hard time making correct decisions, and my vision isn’t exactly truthful. I am very thankful for my husband who is my chauffer. But even when he is driving I see things like people pulling out in front of us, or swerving into our lane, when it isn’t really happening, or at a stand still stop when they are just slowing down. I panic very easily now. And this is coming from a daredevil who couldn’t wait to be tall enough to ride the rollercoaster or to take off and drive cross country by myself. MS makes life a big adventure
I got started writing a comment and then realized I was well into writing and entire blog post. I’m glad you talked about this because I had an accident a few years ago followed by PTSD. However, I got the sense that there was more than just PTSD going on.
My blog post includes an exciting story of a car crash with a picture (but I was fine after).
http://multiplesclerosisdailynews.com/driving-and-multiple-sclerosis/
I am so glad you wrote about driving and MS. Now I do not feel like I have an irrational attitude about driving at times. When I was using Avonex and dealing witb the service side affects my son turned 14 and I needed to be the adult driver as he drove. Needless to say I tried my very best to be calm and help not hinder his driving. He was/is a very good driver but just the awareness of being responsible left me unable to continue helping his driving. I got to the point that I was only comfortable if I was driving and was still cautious then. I no longer have the side affects because I am using Copaxone, but driving in unfamiliar roads/freeways still leaves me very very cautious. Now I realize that MS is impacting me more than I thought. Thank you for your post.
I have been fighting my MS for 21 yrs now, & decided it wasn’t going to be a fight any longer. I am an OR nurse who had to give up a wonderful job that I did well & had to adjust to being home. I now know I needed time to do things, like my Bone Marrow Transplant/Stem Cell Replacement, chemo & irradiation. Driving was never a problem as I decided to relearn how to drive w/ my left foot. It worked like a charm for a bunch of years until one hot night I was driving home alone & had trouble getting my GOOD left leg onto the brake. Someone was on my rear bumper & the lights were shining in my eyes. I was panicking & after I got around the u-turn (jughandle in NJ) I pulled over & let this guy pass. And he did, screeching past me. This was the exact second I knew I needed hand controls. I waited for about 10 mins, & calmed down & drove home w/ no prob. Right after that I asked my doc for an RX to begin the long drawn out tedious task of learning to drive w/ hand controls. Insurance will NOT cover 1 penny, as they told me driving is a privilege, not a necessity!
I told the gal on the phone: “well obviously you don’t live in NJ!!!” SO I decided to go for it anyway as I want to stay as independent as possible. I went to an OT & he taught me to drive this unfamiliar way. I needed 3 lessons at $104 a pop. Then I had to sit w/ 17yr olds to take my new road test. I passed fine, but was so nervous! Then the hand controls & lift I needed to get my scooter in & out of the car cost almost $5k, and again, insurance said no coverage. But I am so glad I did it. I can use my walker to get from the driver’s seat to the back, lower my scooter out, place the walker inside & go shop, or visit a friend, or even go to the movies. It has given me back some independence & I am so grateful. SO please do go out there & get on w/ living!!
Thank you so much for your post on driving!!! I needed it!!! I live in Northern NJ (about 25 min. Outside of NYC) so I know exactly what you meant when you said it is a necessity! I’m tired of every single person telling me…there’s no reason you need to drive. Dave(my husband) or your father will take you where you need to go. I want to take myself where I want to go! I’m An intelligent 37yr old woman and I am tired of everyone making me feel like I’m ridiculous for thinking I should drive. I am at the end of my rope!!!
My onset was 2004, DX’d 2005. As it stands at the moment my balance is almost nonexistant, I can barely walk using a walking frame (10 or 15 metres, any further a mobility scooter or wheelchair), but I don’t have any problems with the function of my ankles or calves.
As such I am still competing in state and national level motorsport, using a car with NO modifications to accomodate MS. Standard 5-speed manual shift, and 3 pedals counting the clutch.
Driving with MS is as much mental as it is physical. I know MS’ers who look like they have no health problems, walk without any assistance, and yet they are terrified of driving AND use hand controls in their cars! Go figure
Thanks for all the comments. Since my MS was diagnosed after a bout of optic neuritis, my eyesight remains challenged. Is it age or MS? The answer is yes…both. Now add to that the cognitive issues already discussed, and like others, I only drive CAREFULLY, where I know the roads, there are few, if any turns, and I am not aggressive, but try not to be the little old guy (at 58).
Walking & balance issues serve to maintain my cautious attitude and my wife (with PD) is often our driver. I am grateful for her! Thanks again for sharing these comments.
I was dxed (technically) in 1998, although, in retrospect, the neurologist said my 1st “bout” was left eye optic neuritis in 1981. MRIs were 1st coming in use in our small community and steroids were the only treatment for M.S. at the time. My vision improved with steroids and I continued as DON of a Home Health Agency. Living in SW Florida, with the heat and humidity, I still had no symptoms. Driving was part of my job, long distances, long hrs. w/o problems. I won local tennis tourneys and played tennis and volleyball several times/wk, so I could handle the environ. Then, in 1998 I had back pains and a squeezing sensation with bending to tie shoes. Now diagnostics were so different. I have tried all the ABC drugs and spasticity drugs with minimal success. The heat/humidity and fatigue
kept me from driving. To go from such an active life to avoiding heat I cannot go out for errands w/o assist of driver. So many of you have a good support system, I do not. So I search for any ideas to get me out again.
So glad this article was posted. Driving issues were one of my first symptoms also…although its always hard to describe how that comes into play. I do have a lesion in the cognitive part of my brain…and in the beginning I would be driving and feel like I was floating…or something! That made me terribly anxious and paranoid about other vehicles around me. During that time frame I also developed other phobias out of no-where! Most of those have resolved but my fear of driving has remained. Ativan has helped with the “floating” feeling and keeps the anxiety at bay at the same time….but the longer I go without driving the whole thing starts over again. Ugh!
I can relate to all the above. But, I got liberated last week and I can say all those problems are almost gone! People please stop your suffering and get checked out for CCSVI! We or any other people can’t function with our veins blocked!
I did get checked out for CCSVI and did not have it. So not all people with MS have this blockage.
I also got checked for CCSVI and didn’t have it – I believe some folks with MS have blocked veins and some don’t. I was diagnosed with MS January of 2006.
The more they research CCSVI, the less convinced they are that it’s the cause of MS symptoms. I’m sure that you’ll feel better initially, although there’s some question whether it’s psychosomatic or a real improvement.
I rarely drive. You’ll only find me behind the wheel if it’s a serious conflict and my husband isn’t available to get me where I need to go. This is all about safety. Much of the time, I feel like I can’t think or multitask well enought o drive. And part of the time, my arms/hands are weak, or my leg is so sore that I can’t lift it off the ground.
Shall I send a photo of my wreck? I have NEVER had a wreck in all of my life and then I totaled a perfectly good Subaru while driving to get donuts for the office. I must have been anxious because that errand, even for altruistic reasons, helped me make poor decisions.
Be careful out there.
I’ve had MS symptoms for 38 yrs but I was diagnosed in ‘07. I am very careful where I drive, that is, when I drive. I have numbness from my chest to toes & wear only flat shoes w/rubber soles to feel my foot pressing the gas pedal. I’ve always been extremely independent (and hope to always be). I sometimes push myself to do things but I prefer to not go to more than two places at a time since it would exhaust me & I write down where I’m going so I don’t forget to go to those places. I usually take Antivert to keep my vertigo under control. Wearing sunglasses helps my driving for all seasons & also at night due to bright headlights, fog, etc. which blinds me. I asked my eye Dr to give me the darkest lens available so it would protect my eyes from bright lights. I don’t go anywhere without my sunglasses. I had optic neuritis in right eye so my right eye vision is blurry sometimes & sunglasses helps this. I like straight roads, not a lot of curves, not a lot of red lights or turns (HA, where can I find this!). I become exhausted from driving long distances as I grip the steering wheel so hard, in case my hands become weak & release my grip. I have gotten lost in places that I’m unfamiliar. If I feel the driving would be difficult, I ask my husband to drive. I’ve had to change my plans on numerous occasions due to my vertigo. I do not drive when I feel my vertigo would cause me to be unsafe.
I don’t drive because of my pain management with MS. I take opiates and that interferes with my cognitive ability to properly navigate the roads.
I was diagnosed in May, so am still trying to figure this thing out and what I can and can’t do. I used to be the go-on-a-cross-country-trip-alone kind of person but lately the lost mobility in my right side is making it harder and harder. I miss the independence but not enough to endanger either myself or my kids on days I feel weaker (hubby drives when we are all together). I can’t drive my 5 speed anymore which is a real bummer for me but I can alternate feet with our minivan. What really gets to me is the confusion I sometimes feel and I have sworn off trips further than 20 minutes from home or in unfamiliar territory. I almost got lost in a familiar place a couple of weeks ago and had to keep telling myself, “keep driving, you will know where you are in a minute or so.” And I did. I’d rather not revisit that feeling! Blessings to you all!
I had panic attacks before I found out I had ms. I wasn’t fearing for me, I feared I was going to hurt someone else because I was afraid I’d forget my turns. Enjoying driving and in which my son used to call me Mario Andretti because of the way I took turns was fun. Not any more. I passed a vision test to drive with my right eye being ok but my husband says I scare the crap out of him and he won’t let me drive at all. He takes me where I must go. If I mention that I want to drive again, I get a guilt trip from him about “you don’t want to wreck our car and hurt or kill someone do you? but I miss it, and my freedom even after becoming one of those little older ladies in my 50’s doing 40mph. I have a terrible time with thinking my car is moving when it is another car. It scares me.
My husband was diagnosed in 1981. With his cognitive issues (short term memory, too much info equals confusion) the PA at his neurologist office was surprised that he still drove. I think what keeps him driving without getting lost etc is that we live in a rural area. He has lived and drove in this area for 32 years. If we have to go “out of town” to a metropolitian area I drive.
I no better than to get behind the wheel- we can be fine one minuete and weak or well not with it- no i would be
oh so upset if i was the cause of hurting someone-
its hard to except- but i do what i can- there are lots of other things i can do.
I was dx’d in 2002 but they thought I have had it for atleast 10 years prior. The fatique go so bad I was falling asleep at stop lights. I no longer drive.
I was dx 2004 but had been dealing with loss of sensation from waist down since 2000, I didnt have any problems driving until recently, I would start to panic even before i get out the front door, so I wont drive that day but on a good day Il drive no problems.
MS has not affected my driving habits too much. I found other forms of transportation when I had was getting over a two-week bout with double vision, but luckily (and knock on wood!) that’s only happened once. The biggest impact has been that I switched from driving a stick-shift to an automatic.
In early 2006 my sense of direction completely vanished. It was pointless to drive. Since then about 5% of it has returned. There are five or six places I can drive to without any problems. Like the originator of the thread, there are times when I simply don’t feel safe to drive. That is primarily balance related. As crazy as it sounds, it is very hard to drive in a straight line when your balance is off.
Speaking of driving, my license comes up for renewal within a month. If it’s not automatically renewed, it might get quite interesting.
Oh my God! I feel so helpless without driving. I LOVE to drive. I feel like my independence has been robbed. I need to get behind the wheel again before I lose my mind. I don’t need to go shopping or run errands, but I do need to get to my support groups and my volunteer work. One of these days I’m just going to go.
Thank you for your honesty! I have felt the exact same way! If I don’t start driving again I am going to go insane! I can’t live this way! I want, need and deserve my independence!
I am really lucky, I am still driving. Before I get in my van I make sure I am rested and feeling will enough to drive. I also keep my van in good running order like the air. I have to have the air or I turn to complete mush brains. If I start feeling bad I pull off the road and go in some place to rest. One thing I did is when I bought my house I made sure it was near stores and a movie theater, so I can take my scooter to the store if I can’t drive.
Many of my non-ms friends aren’t as careful about not going out on days they are feeling bad. I wander how many accidents are caused by people driving while sick and over tired.
diag 2001 w/rrms now have spms. stpped working 12/06, stopped driving 12/08, i just didn’t fel ssafe or myself & others on the road. i miss it. i am confined to a scooter 24/7 & must rely on others to cart me around; it sucks! driving is something i really miss & the ability to have the freedom to come & go.
I just can’t beleive this ! I’m so glad that you wrote about this issue. This passed on as anxiety attacks for years. I now understand much better especially since my neuropsych as shown that I have
cognitive dysfonction in the area of ENCODING which makes sense while driving. I feel overwhelmed with all of the actions and/or decisions that have to be made in a split second. Forget highways that was for me too one of the first place where it all started, I would simply freak out with having to cope with in front of me, side and back ……
thank you for this article , I feel less stupid.
I was diagosed with M.S. 4 years ago. My job was driving heavy equipment for the City of New York. Driving these large trucks took alot of energy and concentration. I realized that I could not do this any more. The fear of getting into an accident or doing harm to people made me deside to retire. Im only 51 years old. After leaving the city me and my wife moved to a condo out of state.My fear of getting lost or not being able to find my way home still bothers me. I try to give myself confedence and became mapquests best customer. Give yourself the motivation and confidence you need to get around using your car you will be glad you did. I was.
I usually don’t have a problem with driving, however, I am unable to drive for longer than an hour at a time and have to rest my legs for about 1/2 hr before driving again…
Congratulations, Diana!
It would be accurate to say that CCSVI causes SOME symptoms that have always been incorrectly attributed to MS–i.e. balance issues, impaired cognition, insomnia, fatigue.
The institutions performing venous impairment procedures in the US and around the world are some of the “best in class” for venous procedures.
Julie-
Thanks for the article on driving. Your experience mirrors mine nearly exactly. I thought I was crazy for being afraid to drive…
With a numb right foot and calf, navigating the pedals takes due care. I avoid driving on days when my leg is jerking, as I won’t risk having my driving leg moving on its own.
I’ve stopped longer highway trips because of the fear of getting a jolt.
Today, I just visited my doctor and she could not see that I had gotten worse. In a four-year period, I’ve grown numb in different parts of my body and the jolts, zaps, buzzing and pain have gotten more pervasive and spread out to numerous areas. Frustrating? You bet!
This post is very timely for me. My husband and I had a tiff yesterday because I “wasn’t listening” to the GPS instructions adn almost made a wrong turn. I couldn’t think of the words to explain how I couldn’t listen to the GPS voice and concentrate on my driving at the same time. Now I don’t have to explain- I’ll print out Julie’s blog to show that it’s an MS issue, not my refusing to play with his new toy.
I still drive but don’t normally put myself in situations where there are multiple lanes of traffic. It just makes me too nervous. I wish other people understood more about MS. I am frequently put down because I don’t like to drive in the
city. People act like I am a wimp !!! I don’t have numbness so other than the nerve-frazzeling, I feel like I am a safe driver.
I was diagnosed about three years ago. I’ve really had it for t least 10 yrs. I’m on copaxone too. I guess I’m very lucky, because I am still driving and working full-time. I have the usual symptoms, but I have to work. I don’t want to give up my independence until I have to. So far, I’m endangering my life nor anyone elses. Can’t give up now! Of course no of us knows what tomorrow brings. Take care
Fortunately, I am still able to drive. My first symptons (that I recall) came in 1992 and diagnosis in 1993, on Avonex from 1997 – 2007, on Rebif since 2007. I too take a “self assessment” about how I am feeling before I get behind the wheel. I am experiencing a real exacerbation or feeling weak, I don’t drive…but most of the time I can drive. I keep all of my “equipment” (canes, walker, scooter) in the car, so I have whatever I need depending on the situation. And this summer, when my air conditioner went out (Ugh!!), I had to start keeping my cooling vest, etc and ice packs (a well insulated portable cooler keeps them cold) in the car as well.
Bottom line….be honest with yourself and others about how you’re feeling and your ability to drive and don’t be afraid/ashamed/shy to ask for help or use assistive equipment.
Driving is the hardest thing I have ever given up because of MS. I have always been the most independent person. I even took off in my car and went to Mexico for two months when I was 17 and never gave it a second thought. Now, I can’t drive me kids around town or to the store without really concentrating and making sure I can do it. I was not aware that so many others had the same problem. In a way it is reassuring to know that I am not crazy, I just have MS.
On the path from minimal symptoms to her current quadriplegia, my beloved wife became less adept at driving but no less insistent on doing it. Mistaking the gas pedal for the brake while in reverse propelled her through a location where children often played. She was stopped by a garage to which she did $17k of damage. Fortunately, no one was hurt.
I confiscated her keys and sold the extra car, with her reluctant agreement.
MS often affects both physical capabilities and judgment, so stop driving well before you are sure you need to.
I diagonosed my M.S. in 1992, after many years of waiting for the doctors to “get it”. At that time, I had no trouble driving, and left the south for New England and the cooler temps….driving an 18 foot truck full of furniture. However, the days of being able to drive the eastern seaboard in a day are over.
I’m 60 now, and 30+ years into the disease. I find that everyone moves a bit too fast for me these days. Going thru the tunnel under Boston feels like going thru an amusement park chute. Although I’m fine on the interstate away from congestion, heavy traffic is a problem. The impules just don’t do their job connecting things in my brain quickly enough anymore. I’m having to carefully ponder whether or not I try any distance driving. And the more I hesitate, the more chicken I get. I guess I better break out my new GPS and see if it helps my confidence level. Once I get in the car and take off, I’m OK…most of the time anyway. Good luck everyone!
I recently had to quit driving. I was happy to drive my 5-speed station wagon anytime I liked, I have had that car for 13 years and chose a stick shift on purpose. Last spring I overshot some parking lot barriers (those cement things) because my foot missed the brake. Scary. I will never drive a stick again, and it looks like I won’t be driving ANYTHING for quite awhile, if at all as my driving leg is hard enough to walk with, much less drive. Thank goodness I forced my son to get his driver’s license just before my leg went out. Not driving really sucks. I hope I get SSDI approval soon so I can get a mobility scooter.
Wow that explains what happened to me several times while driving to and from work same route I have driven to for five years. (which was just a 10 minute ride on local roads never any traffic) I would feel “lost” and confused. I had to pull over a few times and collect myself. It was scary one time for a few minutes I did not know where I was going or where I was- that was the worst moment I ever had with driving! I’ve been ok lately with driving. I do hv my moments where I just dint feel right I just stay home I’m not working now so I do hv that option. Night driving does scare me the headlights bother me so I rarely drive at night. Sometimes I felt it was in my head and I was losing it. So when I read others experiencing similiar”events” it hits me “hey I hv MS”! It’s real!
Diagnosed 2000 w/rrms. NO drugs. Ever. Vitamins only. Nutrition. I go everywhere. Do everything. Drive. Fly. Hike. travel. Even overseas. Many hobbies. High energy. Teach full time. Grown kids. Six hours sleep a night. Harley rider. Meditate. Symptoms flare from time to time, but I just don’t stop my life for them. Last MRI this summer showed no increase in lesions for a decade. For some of us, living with MS is a manageable nuisance. It is a part of me, but not who I am. Newly diagnosed, take heart. My neuro M.D. has not supported my “no drug choice”; but here I am! My choice. Personal choice. I feel well!
I commend you for not taking any drugs. I am waiting for my results from my MRI they did a few days ago. I was informed what they suspect has been going on with me over the past two years. They had been stumped until just recently when I started having more pain/numbness and recently no bladder control. I noticed over the past couple of months that I get confused a lot and get really tired in the afternoon. I haven’t experienced this since before I had my hysterectomy. I realized this week that I am more cautious than I have even been when I drive. I have had more motorists honk their horns at me & I don’t know why. I don’t see that I’m doing anything wrong. My husband has corrected me a few times when he thinks I’m not responding/reacting to other motorists or pedestrians. I have had inter mitten episodes where my vision gets partially blurry for up to 10 minutes over the past 10 years. I just made a mental note of it, never following up to see why. Probably just afraid of what I would find out. Now I’m more afraid of not knowing why I’m having all of these issues. I would love to be able to deal with whatever this is without medication and I hope it can happen that way for me, too. Thanks for sharing. If it turns out that I don’t have MS, your story will make a difference for me when I finally get the diagnosis from my doctor.
Thank you for writing about this subject. My job requires daily driving and I always thought of myself as a safe driver. But over the last few years I have become more anxious about it….waiting longer at stop signs, uncertain about exits and speeds, etc. I just thought it was a confidence deficit. I can’t wait for the results of the simulator-based driving training program. It seems like a reasonable way to gauge one’s ability to drive safely.
Thanks for all your articles about our common «friend», The Lady MS. I’ve had the «pleasure» of her company for 15 years now. I was an RR MSer but, through hard work and self-sacrifice
got promoted to 2nd Progressive MS a couple of months ago. I still drive and it is one of the few things my MS hasn’t still touched (although I do have a mild adaptation made in my car). I totally relate to your words, I get stranded at home the whole day if I didn’t come to work (I’m a Math Teacher still). I have to do the same calculations and go through the same worries when I have to a any herrand outside my normal route (and even if it is). Thanks for expressing my own thoughts and fears on the web about my friend-for-life MS. It takes another MSer to truly grasp our limitations regardless of the good intentions non-MSers may have.
Following 25 years behind the wheel, I voluntarily handed-in my UK driving licence when realised I was no longer fit to drive. I was a passenger in car sitting beside the driver, watching the traffic – as you do – when the car in front, which had been safely 100 yards ahead, suddenly filled the entire windscreen! My feet automatically hit the deck! I didn’t see it coming up! My friend thought I was having a seizure, I just never saw it coming, that’s when I said, enough’s enough.
I guess I’m lucky in a sense. I am still able to drive, but I never drive more the 1/2 hour because I get so tired I’m afraid I will fall asleep. Likewise, I have to make sure that I am not too tired to drive PRIOR to getting in the car. If I am, of course I do not do it. I lost the feeling in my feet in 10/08 and have not been able to wear anything but Crocs on my feet since. However, because they are not “asleep” (I don’t have sensation in them, and I feel like I’m walking on marbles and balled up socks all the time) and I only have loss of sensation in my calves, I am still able to have my feet function on the pedals, . I also have vision problems, but not that severe that I cannot see. Like so many others, my “life” revolves around how I am feeling on that particular day, at that particular moment. It’s something that I cannot stand and it tears me apart that this is happening, but I am slowly……SLOWLY…….starting to accept that my life will never be the same. Neither will my driving!
My best wishes to each and every one of you. I keep *ALL* who suffer from this disease in my prayers every night. =)
Driving isn’t really a problem for me as my left side is the one affected. I limp and have some weakness in my left arm so I can still drive, though I try to stick to the surface streets. Reading the other comments makes me realize how fortunate I am.
I will be turning 56 in November my wife said i should give up driving but i feel like i still
can drive. There are some days that i do not feel like it would be safe to be behind the wheel so i will
not get in the car not even to go to sonic for a coke
even it is only two blocks away from are house.
You just have to make the right call when it comes to
drive or not to drive
I drive almost every day now, but when my MS was at its worst I didn’t drive because of severe vision impairment. I had lost almost all vision in my right eye and the left hurt abominably if I looked from side to side. Since I was diagnosed and finally settled on the treatment that worked best for me (Rebif) my MS symptoms have mostly improved. My vision is nearly normal now in both eyes. It’s been several years since I had a relapse and the only symptoms I have left is fatigue, some blunted sensation in my hands and feet, as well as occasional vertigo that strikes mostly when I stand up.
Oh, I came across this posting at such a perfect time, life is funny that way. I have secondary progressive MS, diagnosed in 2004, symptoms since 1994. The thing that got me screaming THERE’S SOMETHING WRONG WITH ME in 2004 was cognitive problems, especially with driving.
I’ve continued to drive, but slowly over the course of this year have been driving less and less, and then this week it happened…. I am afraid to drive. The explanations other gave sound so familiar to me—feel as if things are going to pop out of no where without my seeing it coming, and some times they do, and just an abject fear that I cannot overcome. And, driving around a Rotary? I could get stuck in the inner lane and drive circles for the rest of my life. My decision making is slow.
Today I’ve made a decision, and these postings have helped. I am going to “practice” living without a car starting right now. We have a good taxi service in the area, and I am also eligible for transport with the Senior Citizen buses because I am disabled, also there’s a local college where I’ve posted for help with house cleaning and such in the past and have met some wonderful college students. I bet they wouldn’t mind earning some money Driving Miss Angela.
I’d rather go without driving than ever take a chance that I’d hurt someone. that would be impossible to live with.
I think by planning my week on Sunday and having hubby help me map out all the destinations I’d like to get to that week, I will be able to do this without too much difficulty.
Thank you all for sharing your stories, you have helped me more than you’ll ever know.
I am 37 and have been living with MS for 15years. About 4
years ago it took a turn and now I am unable to walk without
my walker. I’ve learned to live a happy life regardless. I say
that I am not disabled I am differently abled.
In regards to driving I did not think that I should continue
driving and risk harm to another person as well as myself. I
had a leased car that was ready to end so I did. I then
contacted the NMSS and completed driving rehab with an OT
and took and passed the driving test required to obtain my
license using hand controls. it has been 4years since I have
had a car. When I bring up the subject to my husband or
others they are completly against me driving. I went through
the correct procedures and was evaluated by qualified
professionals in the field of occupational therapy. Now I have no idea where to go from here. Instead of encouraging me to get some of my life back I am made to feel that I am
ridiculous for thinking I can still drive. Has anyone else had
this problem? Any advice?
I definitely have trouble driving. I get confused about traffic lights, get frantic when changing lanes around other cars, and get anxious when cars are swerving in and out of traffic around me. I seldom drive anymore, but have to on occasion since I am single. It is very nerve wracking to have to force myself to drive somewhere I need to go, and makes me very uncomfortable behind the wheel.
OMG!!! i could have written this myself, word for word was written just how i experience my driving. I always question if i should be driving and yet deep down i know im a better driver than alot thats on the road today lol, being conscienscous isnt about being anxious its just a sesible precaution we take as mature drivers and yes im only 40years old but still, im mature ha ha
keep smiling people and be happy, thank you julia your newsletters are what really pulls me through and keeps me strong 
)
I have been trying for 8 months to get training from the St of Ct DMV who is presently in charge of this and it hasn’t happened yet! I stopped driving 5 months ago because it was unsafe because of lack of control of my left leg, couldn’t get to the brake pedal fast enough. I work full time and have to get a ride to and from work, it really sucks. Just wanted to share.
I could not believe what I was reading when beginning to read what you wrote, Julie. I do get nervous, anxious, scared at times when I drive. I tell myself to calm down, relax, everything will be fine. I’ve pulled over on the side of the road before, put my head back, closed my eyes, take a deep breath and think good thoughts. I know eventually this strange feeling will subside, it always does and then I continue on my way.
I am so glad you wrote about this…now I know I’m not nuts! Thank you
My peripheral vision and my reaction time impair my driving skills to the point where I have recently decided it is not safe to drive anymore. I do not have a spouse or partner to help me get around. This was a very difficult decision. I would like to know if there are others in the same situation. I have great support network to help, but I still feel stranded.
I read a post about using college students to help. I would like to know more about that. The money I save by not owning a car will help defray the cost of other forms of transportation but except taxis, inconvenient mass transit and friends, I am at a loss for ideas on how to adjust.
I still work and have rides for work, but doctor’s appoints seem to the biggest obstacle. I don’t want to depend on friends good will. Any suggestions or support for ways to cope would be appreciated.
Driving will be one of the last things I give up. I love the freedom I have when I am able to get around by myself. Lately, I have been forced to always have someone with me because the automatic ramp on my van is broken so I have to have someone deploy the ramp for me. It is driving me crazy. I haven’t had use of my right leg for almost a year now, but we had our van equipped with a left foot accelerator. Now that I am in a wheel chair, we have a van with a wheel chair ramp and a turning driver seat to make transferring easier. This disease has taken so many things from me, such as my career (I was a pediatric surgical nurse and had to give that up when I was first diagnosed-walked with a cane and AFOs). I want to keep as much of my independence as I can. I will only give up driving when I have no other choice and I will be kicking and fighting all the way (figuratively of course, since I can’t actually kick).
Wow, Julie this is so interesting…I have a similar thing when in the car (I no longer drive and am really afraid of harming others or myself so just have chosen to not drive). When with my husband driving, I’m constantly doing the “wife” gasp…cars pulling over from other lanes always seem like they are going to hit us (to me). I thought perhaps it was a visual spacial issue, a residual effect from temporary paralysis in my left eye from an exacerbation three years ago (the one that finally got me diagnosed with rrms). That eye is still slightly slower in tracking than my right eye. I hadn’t considered processing speed. That also makes sense. Thanks for writing about this. I HATE not being able to drive and how that hampers my independence, but life is what it is.
I also worry about the randomness, suddenness and intensity of fatigue. I have about a 2 second warning before I know it is going to hit and I lose strength, coordination and stamina in my right leg. NOT enough time to pull over when driving.
Life with MS is interesting, that’s for sure!
I also developed an irrational fear of driving and stopped driving 2 years ago. Glad to hear the stories of others!
I almost cried when I read this. I stopped driving when I was 28 years old. I was anxious and it got worse and worse everytime I drove. I was then getting rides from my husband and friends to work. When I was 31 I was diagnosed with MS. At 32 I started driving again. I am now disabled because I was diagnosed in 1988 before the drugs. It is nice to know that I was not crazy or hysterical as some Doctors would say.
Thanks you so much,
Susan
I can go to work or the grocery store by myself no problem. But If I need to go to the mall or shopping by myself I get stressed thinking about it and change my mind. I am able to walk and can drive well. But there is a fear that stresses me out . I can not explain it.
I was dx in 2009. Shortly after I was diagnosed, I almost went through the window of a storefront, pulling into the parking lot because I couldn’t feel the brake. Needless to say, I gave up driving after that. I absolutely hated to, but it was a safety issue. Luckily, I live in San Francisco, where it is not difficult to get around. I utilize paratransit, where for $2.00 I can get anywhere. They pick me up from home, and drop me off. I take it everywhere. I also can buy $90 worth of cabfare for $15.00 a month. Most big cities have a paratransit service, and I recently found out if you qualify in one city, you can use it in any city that has a paratransit service. We are planning on using it when we go to Southern California soon. Downside is you have to make your reservation at least a day in advance so it takes some planning. The good thing is, if you have someone travelling with you, they can ride for free. I take it shopping, work, friends home, wherever. Look into it people. There are some advantages to being called disabled!
I gave up cars about 10 years ago and started driving motorcycles. Never really had any cognitive issues while driving, but my right foot and leg has gotten worse the past 5 years. It was bad enough that I couldn’t operate the gas and brake pedals in a car. Motorcycles are hand controls for the most part (foot shift on the left – my good side) and you really have to focus on driving with a motorcycle. Also helps keep my balance.
That said, it is now getting harder for me to get my leg over the bike, especially when weighted down with the safety gear (leathers, helmets, etc.). I still need to get to work so I’ve been evaluated for automobile hand controls and will have them installed in a week.
Your comment made me think back to when I started to have fear of driving when I lived in Maine and was single. I was not diagnosed with MS back then in 1996 when I was fearing everything. I was finally dx with MS in 2008. My doc said it looks like I have had it for 12-13 years. So, little did I know back then it was the start of the ms road.
I still drive. I am stubborn and refuse to give up the pleasures in my life unless I absolutely have to! With that being said, I will not drive if I feel in any way that it is not a very good M.S. Day. I support Mothers against Drunk Drivers and understand the depth of any persons ability to drive safely all of the time. Everyone with a license should always respect this priveledge. Accidents can happen without extra help!
Wow!! I just thought I was having anxiety attack; not MS related. I hardly ever drive anymore; but I did get my drivers license renewed in case of an emergency. My husband doesn’t want me to drive and is fine driving me to and fro (bless his heart).
Whenever I do drive I feel as though my heart is going to come out of my chest and I can’t tell how far cars are from me. There were even times that I couldn’t tell if the car next to me was moving or not. Good to know the reason why.
Thanks so much for posting this issue! I have had R/R MS for 30 years. My main problem with MS is that freeway driving is impossible. My family, and even I, thought I was just being anxious for some neurotic reason – I will copy and send all this to them! The speed of freeway driving is just too much for me…the feeling it gives me is hard to explain. I also sense this “floating” sensation and makes me feel totally out of control. I also have panic attacks if I have to descend riding an escalator (up is no problem) so always take elevators.
It is very coincidently wrote about this topic. Last week I had my first really bad experience driving. For some reason I became very anxious in route to the doctors office for just a simple cold.
I knew I was driving but I really couldn’t see where I was going. I pulled off to the side of the road and set there for a few minutes trying to understand why my vision had suddenly become so poor. I’ve had poor vision before but usually it comes and goes and is very predictable. I know for instance I can’t drive at seven o’clock at night. But I know it’s seven o’clock in the morning I’m perfectly fine to drive. I went to the doctor she didn’t vision test and said I could not drive until my vision returned to normal. A week later I drove again for the first time. It was a first for me cannot drive solely because of my vision. It seems to me the overall factor in most of these posts with stress and anxiety. I become very anxious about nothing. I do not really have anything to worry about. But yet I feel as though I’m waiting in line to see the principle of my elementary school. To me anxiety is one of my biggest problems with multiple sclerosis. The other things I can deal with. The anxiety I cannot deal with that. No matter what Bill I tried taking it really just doesn’t work. Then you have people just say oh don’t worry about it. But you worry anyway. You worry not knowing what you worrying about that’s the funny thing.
long before getting diagnose sense something wasn’t right . I love to drive . Snow storms or blizzards didn’t bother me . Then things change. I don’t drive b/c of the changes. Better safe then sorry. I thank GOD my daughter patient in doing the driving for what needed.
My MS diagnosis was over 20 years ago but cognitive issues slowly and painfully altered my freedom to go on any more long drives I loved to do.
I am too often reminiscing about this in my room at the assisted living facility…
Driving and M.S.
Yes I still drive, on the days I feel that I can. Yes there are days when I feel that there is no way I can drive, then there are says I feel I can drive. I have more days that I can drive. The only problem I have is my mobility when I reach my destination. If there is a shopping cart available I am happy there have been times I have had to turn around an go home if there was no cart available. (I find that extremely frustrating!)
Yes I have a rolling walker for my mobility, but it is so hard to shop with a walker, they don’t make them big enough for shopping!!!
No one can tell you if you are able to drive you have to make that decision yourself, but be honest to yourself and if its a bad day to day perhaps in the next few days it will be a good day and you’ll be off driving again.
It happened to me too. Sometimes I would feel as if I were floating, not sure of where I was. And my eyes are not the best, so it made me very unsure of myself. I too do not drive if I’m not feeling well enough to do so. The first time it happened it scared me to death. That was almost two years before I was diagnosed. Now I take “inventory” of myself every morning which makes each day less stressful.
I still drive, even with my right foot drop, but if a friend or family member
offers to drive me anywhere, I take them up on their offer.
I don’t like taking my grandchildren in my car anywhere and that makes me sad that I don’t feel confident enough to do that.
I do usually drive myself to go shopping but once at my destination, then there is a problem, because even wearing my AFO I have trouble walking. I seem to only shop where there are shopping carts so I am limited in that respect.
Only 9 months ago I was going to work every day, driving myself and walking around the shop, with the help of a small cart .
As I am reading comments from other people regarding this subject, I feel fortunate though, as I am still mobile.
We just have to make the best of what we have been given.
But, some days it is easier said than done!
right about the time I was diagnosed in 2010 (optic neuritis), I had to drive from the Olympic Peninsula to Seattle for my appt to find out how all my tests turned out. I totally missed the turn I needed to make to take the Hood Canal bridge; it was well lit and well marked and I don’t know how I could have missed it; I had felt that it was because I was stressed out about the appt, but who knows.
Also right about that time my husband and I were broadsided by a car running a stop sign and rolled over several times (no major injuries thank goodness). Ever since then I’ve felt much more anxious in general driving… and it’s been snowy here lately which raises my anxiety level even more.
IT WAS SO NICE TO READ EVERYBODYS ARTICLES,IM NOT THE ONLY ONE THAT FEELS LIKE THE CARS MOVING BUT ITS THE CAR NEXT TO U. OR CHECKING FIVE TIMES BEFORE U PULLOUT FROM A PARKING SPOT. MY PHERAL VISION IS BAD ON MY RIGHT SIDE. MY RIGHT LEG A ND FOOT ARE NUMB ALL THE TIME. I LIKE TO DRIVE WITHOUT MY SHOE ON SO I CAN FEEL THE PEDAL.OF COURSE ITS HARDER IN THE WINTER TIME.I HATE DRIVING THE HIGHWAY TO MANY CARS. THANKS FOR THE INPUT I DONT FEEL LEFT OUT.
Everything mentioned above has happened to me and still ongoing. After the car wreckage, I’m scared to drive. Riding by the scene(Bridge facing the river) where it happened gives me nightmares. Next time I would really have to evaluate and be honest with myself before getting behind the wheel but it won’t be anytime soon. And I don’t know if theres going to be a next time, its very stressing and emotional. I really hate MS!