I put a large padded cover on my slick steering wheel and my car is a pushbutton start which I can do with my knuckle. We just got back from a trip abroad where like an idiot I rented a standard shift car. Sometimes I forget with this disease has taken from me. But as long as I can press the brakes turn the wheel and focus I think I can still drive even if I need to use the store scooter when I get there.
I had right foot drop so had to stop when I felt my reaction time was too slow (last July 2011/ symptom onset spring 2010). I didn't go for hand controls because I knew that my left leg was weakening and I wouldn't have been able to manage getting out of the vehicle and into a w/c on my own.
Your Clinic can have PT or OT do a driving assessment.
If your hands are not involved yet, there are vans that you can drive into the driver's position and then drive using hand controls. A seat can later be added for someone else to drive the van when you no longer have that ability. In the rear entry van that we looked at the PWC would then be locked down in the center of the second row of seating.
I continued driving as long as my left hand could still grip the wheel (also got a padded cover, it really does help) and drove with my left foot for over a year once I had developed foot drop on the right. I quit driving right before my 33rd birthday in April... I was having a really hard time pressing the gas and brake with my left foot and kept having nightmares about driving and rolling through intersections because I couldn't push the brake! The nightmares stopped when I hung up my keys for good.
When I felt dangerous to myself and others. The last time I drove I felt that if someone screwed up in front of me that I wouldn't be able to break quickly. My legs are hard to lift and move. It stressed me out badly. That was the sign I was looking for.
I had a full-size Ford super crew cab 4X 4 that I was having trouble climbing in and out of. I carried a stool to help climb in. (I used my cane to grab and pull up the stool.) My life grow and Oldsmobile which I had trouble getting out of (not to even mention her Miata which was like climbing out of a hole.) I traded for a Ford Flex as it had adjustable seats and all the features so I can carry my scooter in it.
Soon after that, my wife said my reaction time was getting too slow and she felt I needed to allow her to drive me. I agreed.
Shortly after that I had my respiratory failure and now the Flex, (and Miata) sits idly by while I ride in a wheelchair lift handicap Van.
If you're having trouble turning the key, or getting in and out, or quickly applying the brakes, then it is time to pass over the driving to others. It is not safe for you or those around you, or the innocent bystanders for you to drive under limited abilities. We often look 90 year old drivers and remark how they should not be driving. It is no different for a diminished capacity ALS driver than for an overaged driver. If you are having difficulties, it is time to stop. It is better to surrender your independence and to risk harm to yourself and others.
Marta, I'm in the same boat... er, car as you. I can't lift my legs quick enough so I've pretty much handed my keys over to the others in my house. The last few times I drove I put a strap under my right leg "just in case" and held onto it with my right hand in case I needed to stop quickly. Thankfully never needed to, and I never had a problem. Just felt funny about that many accommodations and still driving.
How do you manage to drive at all? You posted this four months ago:
The weakness is in most areas of my body. I can no longer stand unassisted from a sitting position. When I get into my car I cannot lift my legs into the car unassisted. Lifting is limited, things continue to slip out of my fingers due to decreased pinching strength. I drop most things from my hands such as pills. The strength to hold my utensils to my mouth has been fading', after several bites I find myself lowering my head to get it into my mouth. I just returned to the Netherlands from the States and a wheelchair was required to transport me to the connecting flight, it was just too far to walk I couldn't do it. Falling is becoming more common, my legs just collapsed. Upper body strength is no longer compensating for my lower body weakness.
It seems, my muscle wasting has still allowed me to control with my right leg the gas and brake. The problem is with standing and getting up I have no lifting strength to those positions. With my hands and arms, that is better with an automatice because no pressure is required or upward motion required. Steering is on the lower part of the steering wheel, I didn't notice much change there because I have always driven from the bottom half of the wheel, I know a bad habit. Holding the utensils has been a finger grip problem not in using the palms. We changed a couple of months ago to a car with automatic and a higher seat so climbing out of the car or into the car was not a big issue as it once was. The wheel chair was due to decrease stamina in distances.
It is amazing after reading what I posted, how much adaptation we do without realizing it. My wife tells me about it all the time, and now she is talking about my driving. That is why I posted the question, you know as well as I how difficult it is to give up the independance of driving. I have a friend that drives his van from a stretcher type adaptive seat, he is a quadrapelgic with limited use of limbs. So when I see him, I just think well I'm not that bad yet. So the time is rapidly approaching that my driving will end.
Sometimes patients with certain illnesses still see themselves in good health. It is like those people that are in a lifeboat for 30-90 days. They still see themselves as being in good condition, even when they have lost half of their body weight. Thanks for reposting my post, it makes me look at myself and the disease progress and a reality that I do not want .
One more side note, I find it amusing at times when my wife and I go to the doctor. She tells them how much I have gone down hill, and I think are we talking about the same person? So I guess the observations of our loved ones is more critical than we are on ourselves.
I strongly urge you to stop driving now. I recently gave up my own 5 speed 2 seat sports car and I know it hurts, but that pales in comparison to hurting someone else because your arms won't let you steer out of the way of a collision.
It is a terribly sad and unfair to have to give upthe freedom that driving brings. My husband drove even when I thought he should have given it up...it was so hard for him to let it go. He could still walk a little at that time but was mostly on his scooter, and he could hardly lift his arms to the steering wheel. One day a car pulled out infront of him and we almost crashed because he could not react fast enough. the kids were screaming, I was crying...he never drove again. Don't wait --safety istoo important.
Pay attention to the PALS responses to negotiating and reflexes, not just considering the motor abilities.
My PALS cannot back up anymore without turning the wheel the wrong way. He also turns too soon.
He pulls out too soon to pass, and pulls in too soon. Never before ALS did he ever make these mistakes.
He parks crooked in the parking spaces. Some days he is in a hurry, and others he drives too slow.
Obviously he drives very little anymore and mostly not at all. Very sad. Still, some days he's fine and
others not. It's too dangerous to chance.
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