Driving with double drop foot?

Bestfriends14

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Hello,

I would like my husband to have his independence for as long as he can, however, he has double drop foot but wants to still drive. His right foot (gas and brakefoot) cannot go back on its heel and cannot go on its toes. He can still push with his right foot, but not as strong as before the drop foot.

How long can one drive with drop foot in the driving foot? Should he be driving at all? Did any of you (PALS) drive with drop foot?

Thanks!
 

Nikki J

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I can’t walk on my toes with my driving foot either. It is otherwise pretty strong. It does not drag or slap when I walk and I can still move my doctor’s hand when she examines that foot. When it started I asked the driving question and was told by doctor, np and pt that is still safe with a good margin. I continue to ask every visit and sort of test myself frequently that I can hold the foot flexed up and move it quickly when sitting. I also have no spasticity or clonus there

I did not get a really good answer to how will I know to stop. They said you will know.

There may be a place where he can get formally tested to see if he is safe. I would at least have the clinic give an opinion

If he is still ok how long is of course completely dependent on progression rate
 

KarenNWendyn

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I have double drop foot and can still drive, but I have to wear my AFOs to do so. The other issue is whether one has enough strength and coordination in the hip muscles to lift the leg up and down to push on the gas and the brakes and to go smoothly between the two.

The time course for when to quit depends on rate of progression and what parts of the body are involved and to what extent. I’m currently using a wheelchair but am still able to transfer from the wheelchair to the driver’s seat (in my van, the wheelchair sits adjacent to the driver’s seat). I figure I’m done driving when any of the following occur:

a) inability to transfer to driver’s seat
b) upper leg muscles too weak to control gas pedal or brakes safely (including spasticity/ clonus)
c) inability to control steering wheel for whatever reason
 

Bestfriends14

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OK, phew!! That makes me feel better. Thank you so much, Nikki and Karen. I guess I can stop being all naggy and motherly to my husband then. Poor guy...

Have a good evening.
 

KarenNWendyn

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I should add that in my case, I don’t have the strength to release the parking brake with my foot if it is fully depressed. If my spouse parks the van, I insist the parking brake only be depressed one click so I can release it. Fortunately we rarely need to park on a hill.

I’m also lucky the van has a start button because I wouldn’t be able to turn a key. So many factors to consider.
 

Clearwater AL

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If I may add, another consideration is reflexes... which employs the upper
muscles of the leg in a sudden circumstance where adrenaline can possibly
adversely effect the muscles while driving.

It's a hard call to make.

At my last clinic my neuro asked Ann if I was still driving. She quickly ask
another question and we changed the subject quickly and he let it go. :)

Just something else to consider. Be aware of that too.
 

Nikki J

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I agree with Al and as I said above this warrants an evaluation by doctor, pt or testing service.

I do think some PALS drive when they should not. It happened with family members. Drop foot alone is not a disqualifier but the whole picture could be.

Al my clinic has a questionnaire that you fill out either on your own device before an appointment or on a tablet in the waiting room. One of the questions is do you drive. I don’t think you can skip questions and they insist that you do it before you are seen. Other questions are about falls and how likely you are to fall in certain situations. I forget the others
 

Bestfriends14

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I agree, Nikki, with looking at the whole picture. He's still very slow progressing (thank you to whatever is up or out there), so his arms are fine, just his left pinky and ring fingers, and leg is very strong. He's got clinic on the 17th and will ask there, of course. I just don't want him to lose such a key piece of independence.

Al, he does have spasticity in his legs, but for whatever reason, the last year it has calmed down. His cramps used to be quite bad, too, but not so much now either. He is on about a billion vitamins a day, edaravone , and ibidulast, and I think that helps with the UMN stuff. Who knows, though.

Karen, Al, and Nikki, thanks for your answers.
 

Vincent

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As someone who built artificial limbs, allow me to weigh in. What he needs is an AFO to control the ankle and learn to use knee flexion/extension to control the pedals. As someone who wears bilateral AFOs it is how I work around lack of ankle movement. It's worth a try. It's how amputees get around lack of ankle movement. I don't guarantee clutches on stick shift cars
Vincent
 
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Bestfriends14

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Hi Vincent,

My husband wears AFOs on both feet, right has a carbon, which he says hinders his driving more than without. As long as he's careful, I cannot nag him. And yes, stick shifts are scary! We found that out driving out of a car rental agency in France.
 

BK2011

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Well, I have a different suggestion. I have bilateral foot drop and use AFO’s on both legs. My throttle control was really rough when I used regular controls. I don’t use my legs to drive anymore; I have hand controls on my van. Moving to hand controls in the van was pretty easy. Had about 30 minute orientation with the hand controls and went down to the DMV and took a drivers test to get hand controls put on my drivers license and was good to go. Works fine for short local trips but my upper body strength is deteriorating and my shoulders start getting sore if I drive for an hour. I do use cruise control more than I use to and rest my elbows on the arm rests as much as possible.

Bill
 

swalker

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Like BK2011, I rest my arms on the armrests and use the cruise control a lot more than I used to.

I want to give up driving as gracefully as I can when the time comes. To make sure I am not kidding myself about my driving ability, I followed my neurologist's recommendation and was evaluated by a specialist. This was a rigorous and very tiring 4 hour session that consisted of cognitive tests, coordination tests, strength tests, and then a driving test. I was glad to pass.

If my legs go first, I will do what BK2011 did and get hand controls.

When my arms give out, I plan to outfit my car with an EMC AEVIT system that has a joystick for steering and touch screen controls for everything else.

When I can no longer safely drive, I will let others drive me.

Hopefully, fully autonomous cars are coming sooner rather than later!

Steve
 

Bestfriends14

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@Karen ha ha!
 

OutlanderALS

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At my last clinic evaluation, I was, yet again, asked if I was still driving. The pt and ot had a series of tests that they put me through and the conclusion was that I should NOT be driving. I have double afo's and major spasticity, as well as foot drop.

No one yet has mentioned the effects of medications. Although I feel that my medications list is still "reasonably" short, I do think that the cumulative effect of medications upon physical and mental reflexes should be taken into consideration with the issue of driving.

In addition to the safety of the Pals, the safety of other drivers and passengers, in my opinion, must be seriously considered. I was diagnosed in 2018 and was driving until last month, and truthfully I thought many times about the effects of an accident if I were the driver. Should any accident occur, I am certain that the medical record and diagnosis of als would darken any outcome for all involved.

We also just received our auto insurance renewal and must now investigate and determine if I should remain as an insured driver or dropped from the policy. I know that in an emergency I could still drive, and so would want to be insured. On the other hand, even in an emergency situation, my medical record would still be what it is.

My not driving has created a new "normal" and my husband is the only available driver. And yes, I do miss my independence. But we live in a large, metro area and traffic is always frantic, so safety must be the first consideration.

This is a very difficult stage (but then there haven't been any easy ones!) in our progression. Like everything else, each of us is on a different journey with this disease, so best of luck to everyone with this particular decision!
 
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