ALS and driving

[Susana Rave]

Hi Kathy,

I was diagnosed earlier this year and I am still driving, one of the few pleasures I can still participate in.  I have not had any notices from the DMV (thank goodness!)  I am also still working so I drive to work 3 days a week.

Good luck.

Susana

[Kathy stitz]

Hi Susana,

Thanks for your post.  Glad you are still able to drive.  Another thing about the situation I described is that I think people should have the right to know who reported them to the mva.  Best wishes to you.

[Dagmar]

Kathy – – this is the first time I’ve ever heard of being barred from driving due to ALS (medical condition)… especially from an anonymous report. I doubt if it came from your doctor’s office, as they would have to first inform you they are doing it. ….perhaps you have a “frienemy” out there?

I continued to drive for a few months following my diagnosis, but since my initial symptom was drop-foot (right side), I decided to stop driving due to not having confidence in my foot reactions. Soon after, I began wearing a sturdy AFO (ankle brace) which prevented flexion/extension. It was like wearing a snow ski boot – – I would have flown right thru stop signs! 🙂

Now, my husband does all the driving – – although I’ll admit I do tend to “help” him from my spot in the passenger seat. You know, “the light’s green,” “you can go now,” “lookout!” – – you know, helpful stuff 😉 😉

[Kathy stitz]

Hi Dagmar,

Thanks for your response to my post. I haven’t been told I cannot drive yet.  Like I said, I turned in all the paperwork to the mva and am still waiting for their decision.  That was funny what you said about your husband driving, though!  It feels good to laugh even in the midst of the suffering, not just for myself but all of us who are suffering with this horrible condition.

[Susan Gray]

Kathy,

I am still driving after being diagnosed in November 2019.  Luckily my left foot is the one that’s affected with drop foot, so I still feel confident.  However, like Dagmar, when my husband drives, I am not hesitant to help him out!  😉

Susan

[Beth Ferguson]

I am still driving. but my head control is not as good as it was and I’ve just stopped driving on the interstate, still doing local short distance driving. When I got my handicap permit, my NP asked me if I felt safe driving since that is a question on the application. At the time, I was confident driving so that is the way she answered the question. I think every state has different laws for reporting. I am dependent on friends since I lost my husband last year. Fortunately I don’t go very far.

[Bill]

I’ve been diagnosed for almost 3 years and just renewed my license by mail with no questions asked. Luckily no foot issue and just added a wheel spinner to aid in steering one handed. Heard a similar story of a pAlS getting a doctor letter to submit.

[Cindy]

like Dagmar, my first symptoms were in my right foot and leg. 10/16. I continued to drive until lifting my leg from gas pedal to brake started to become a problem. 4/18. We could have adapted the car but I was reluctant. I miss driving. But then again I miss walking. Just grateful for our wheelchair van. I can still go places with my husband. I did not renew my license but did get an ID through motor vehicles which looks just like my license did.

[Marianne Opilla]

I am lucky so far. Left foot -right hand affected. So I can drive. My husband worries about fatigue and driving so I just drove local. My appointments are 2 hours way so he drives me. (Although I think I could take myself)!

[tomd]

I can still drive but its hard. My difficulty is not so much my legs but my arms, I can’t stretch them out in front of me. I have little turtle arms now, so it’s hard to shut the door and hard to reach for the steering wheel, I put the seat far forward toward the steering wheel and lean into it to get my hands on the wheel. Once I get my hands on the wheel I’m okay. Bill in his post mentioned a wheel spinner, but I don’t know what that is or where to look at one.

[Kathy stitz]

Hi Dagmar,

My mother said that the mva said that nobody has to tell the person first that they are reporting them, not even doctors.

[Mary Tiknis]

I am still driving locally

i don’t feel comfortable driving on the parkway or long distances

My husband and kids drive me when I have to go out of town

[Dagmar]

Kathy – – that is interesting!

[Leslie]

In my state, physicians must by law report a patient who is at risk driving.  And by law, the DOT must not disclose the name of the reporter, even to the patient. The doctor needs not inform the patient of the reporting.
Some states may require just self reporting but this leads to high non-compliance, given the social and economic pressures to drive.
It is the responsibility of the DOT to determine the status of the patient’s driving privileges, not the clinician.
If the doctor doesn’t report the patient, then they can be held responsible as a proximate cause of an accident.  They can also be convicted of a criminal summary offense.  They are exempt of any civil or criminal liability if they report the patient.
I hope this helps in answering Kathy’s questions.

[Kathy stitz]

Hi Leslie,

Thanks for your response.  I am proud of myself for the time and effort I have put into trying to deal with this situation.  This is something I try to remind myself of when I become angry about it.  I feel like people have the right to know who reported them and this is just another situation in life that is unfair and frustrating.

[Carolyn Barry]

Before I was diagnosed with ALS, I had a few times where my driving just wasn’t “right”.  I would be making a right or left turn, thinking I was turning the steering wheel enough, to be fine.  But then, I found myself making a wider turn than I should, or going a bit over the curb.  I only thought it was one of those odd things, and not a big deal.  I also noticed when I stepped on the brake, I’d end up closer to the car in front of me.  I still thought I could still safely drive.  Then, I had a day where I was driving to a doctor’s appointment, and had two near accidents on the way to the office.  My less than ideal right turn, ended up with my car almost hitting the car sitting at the light.  I wanted to pull over and stop right then, but thought I could drive the remaining 5 minutes to get there.  As I approached a stop sign at a T intersection, I stepped on the brake, and even with my best effort, I couldn’t get my car to stop until I was in the middle of the highway, past the stop sign.  I was in a panic and then pulled into the doctor’s parking lot, and that was my last time driving.  I am so thankful that I didn’t hurt anyone.  I should’ve “listened” to my increasing muscle weakness in my arms and legs.  I will not drive again, due to leg braces, with no flexion at the ankles, peripheral neuropathy, foot drop in both feet, and significant muscle weakness in my arms and legs.  My ALS diagnosis, came about a week ago.  I really miss driving.  I think everyone with ALS should drive as long as they feel they can.  I am so happy for those that can!

[John]

Hi Kathy,

In my province doctors must report any diagnoses of drivers that might affect their ability to drive, so when I was diagnosed the motor vehicle department required me to get a note from my doctor saying my abilities to drive were not affected. They do this every 2 years. It seems like a good idea, even if it’s a nuisance for me. For the first few years I was fine but then progressed from a cane to a walker and then a mobility scooter in 2005, 4 years after my diagnosis. At that point I purchased a used ramp van with hand controls so I could continue to drive. My legs are now nearly useless although I can stand for a few minutes if I can support myself. My arms and hands remain little affected so my driving is fine. For me the combination of scooters and ramp van make life so much better than the alternative.

 

[David Crellin]

1. Hi all, in the UK I have to tell the Driver & Vehicle Licensing Agency (DVLA). They then checked with my consultant who confirmed I’m fit to drive. And I now have a three year driving license with no increase to insurance.
2. It just so happens that an old work colleague was director of enforcement at the DVLA. Now retired and has developed multiple sclerosis. So we keep in touch and he remains a very useful person to know. Tee- hee.?

[Allen Lewis]

I was officially diagnosed with bulbar onset ALS seven months ago. I say “officially” because in retrospect the symptoms began showing probably a year ago: at first a slight lisp, then a slight slurring of certain words and sounds which became too noticeable to ignore. I still drive and am abundantly thankful for that. Driving has always been and remains one of my great sources of relaxation, pleasure and independence. My speech continues to deteriorate to the point that only my wife can understand me. Fortunately we live in a country where I do not speak the language and English is a far second, so a few words at the gas station and coffee shop are all that are required of me, and I can still manage that. As to driving ability, I honestly think I am a better driver than before the diagnosis, much more vigilant, careful, ever watchful for changes. But so far so good, as they say. With my 79th birthday just around the corner, the only real symptoms I’m experiencing are deteriorating speech, difficulty chewing and manipulating food in my mouth, and a bountiful flow of saliva which is increasingly difficult to keep in my mouth. I wear a hand towel draped around my neck as part of my standard attire and find myself constantly wiping my mouth. I am also experiencing a profound general fatigue and weakness later in the day and evening, which I attribute to the combined side effects of Rilutek and hormone shots I get for prostate cancer. Early morning walks with my wife are a high point of my day. That, and driving…anywhere, really..are I think what’s keeping my spirits reasonably upbeat, although the elephant in the room of my mind is always what’s in store in the near future, and the awful realization that I will gradually lose my ability to care for myself and become an unbearable burden on my wife, who is younger than me but not much, already in her 70s. I am seriously considering at what point it would be time to just call it quits and have secretly made preparations for that. I have no intention of ending my days in a powered wheelchair or hospital bed with tubes down my throat and in my stomach. I have witnessed people close to us end their lives like that over years. That’s not for me.

[Kathy stitz]

Update: I received a letter in the mail today from the MVA stating that I can continue to drive for now.  However, in a year I have to complete the paperwork again to ensure I remain safe to drive. Also I have to notify them immediately of any changes or decline in my medical condition that affects my ability to safely operate a motor vehicle.

[Dagmar]

Thank you for your update Kathy. I’m glad you’re able to keep driving 🙂

[Kathy stitz]

Thanks Dagmar!