How to know when to quit driving

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trying to stay positive

Distinguished member
Sep 17, 2007
Chicago area
Hi everyone,
I am concerned about my husband. (DX 8/07) How does one know when it is becoming unsafe for a Pals to drive? My husband does not communicate about his ALS very much, and when asked he will give me limited info. He admits that his legs are getting weaker and I can see it when he walks and goes up the stairs. We go back to clinic on Thurs. and I would like to ask the doc about it, but I am worried that if I bring it up he will get mad and not let me go with him to his appointments (He has done that in the past with his ortho doc) I guess I can try calling the doc after our appt. I was just wondering at what point any of your Pals knew that it was time to give up driving. Thanks for any feedback.
2 cents

Hi Linda-
I've read your post a few times & since there has been no reply - I will give you my experience with my friend. He continues to drive, and hasn't had the strength to climb stairs for 6+ months. He loves to drive - in fact, he just had to sell his big truck and bought a conversion van - this was tough for him - but he is happy that he can drive. He did not get hand controls because his strength in his arms is also deteriorating. He is a great driver and this will be a big blow when he does have to give it up.

I just lost an uncle to ALS too - he loved to work and drive. His progression was fast - but really - he went REALLY fast when he was no longer able to drive - died 2 weeks later. He was very weak at this point, but really took it hard when he could no longer drive.
Driving is a big deal, ( especially to guys) and to take that away can be devastating. If your husband is comfortable, and can be careful and safe - then let him continue to drive. He just needs to be able to say when he's too tired, knowing it will not be the end of driving as he knows it.
If you are in the car, then by all means, let him drive - you'll learn quickly if he is reacting OK.
Good luck @ the Doc.

I knew it was time to quit when my foot got slow coming off the gas on to the brake. When I was pooped from the walk to the truck I wouldn't drive.
You could always call the doc before and ask him to check your hubby's reflexes in relation to his driving ability and that way the doc brings it up not you.
I agree with Al -- talk to your doc and get him to raise the issue and take the heat off you. Driving is serious and potentially deadly business. An impaired driver is a threat to others which makes this one area where we ought to take great care in indulging our PALS emotional tie to driving.

my DH drove for quite awhile after his diagnosed. He said it was the only time he felt like he wasn't disabled. He was an excellent driver and I was not concerned. However, I asked him to stop driving when he started getting severe coughing attacks. Then everthing just stopped and he was gasping for air...(by the way now with the bi-pap and cough asssist he doesn't have the severe coughing attacks anymore) I told him there was no way he could drive when one of those attacks struck and he realized I was right. Now he can no longer drive because of very weak legs, dropped feet and clawed hands so no attempt has been made by him to start driving again.

I think when your husband feels he is not in control and could be a danger to himself and others he will stop...but you might have to watch just in case he doesn't stop himself!
Linda,oh boy i know what you are going through!I also struggled with the same issue with my husband driving.He owns a 68 convertable cutlass and it was one of his great pleasures to drive it.He often went to car shows before and after he was diagnosed..Just before he gave the driving up i also worried and watched him so close all the time usually with my foot on the floor ready to brake!Now that summer is over and his car has been put away for the winter i am glad.We also have an suv but he hasnt wanted to drive for a long time now so i am so thankfull that he decided to let me drive.I was dreading having to tell him that he could not anymore....hopefully you wont have to make the decision for him and he will realize himself when he feels he can no longer drive safely......Gina
Thanks to all for the great advice. Al, I did call his doc yesterday and spoke with the nurse. She was great and understood completely. She not only made a note on his chart for the doc, but told me that the driving issue most likely would have been brought up during this visit anyway! My husband has a cold and quite a bit of congestion. Does anyone know if this will affect his FVC? I always get nervous before his clinic appts!:-?
Colds or congestion can make a difference. Mention it to the technician especially if he is taking meds for it. They will either make allowances for it or not do the test.
Clinic visit update

Thought I would give an update on my husband and our clinic appt. yesterday. I think it went pretty well. The doc tested his muscles and talked with him specifically about the driving issues. He has lost quite a bit more strength in his left arm, shoulders and his stomach muscles are weak. Also his legs have gotten weaker. They gave him a script for a left foot AFO. He was receptive to the idea, which was a great relief to me.:) I was worried he would not want anything of that nature. So maybe he is moving into acceptance after all! His swallowing is still good, and his FVC was 89%, so I an VERY happy with that! :-D So it seems the disease is progressing, but not at a horribly fast rate.

We still need all the prayers we can get in regards to finding a buyer for our house. I read that the housing market is at a 22 year low!:( But I keep affirming that the perfect buyer will appear at the perfect time. (now if I could just remember that that means in God's time, not mine!) Thanks everyone for the help and prayers. It is GREATLY appreciated!
the house issue

OH Linda - I wish you the best on finding a buyer for your home - my friend (PALS) and his wife just finally closed tonight - in fact I just called to see if the closing went well- there was no anwer. but it has been a big struggle for them - 3 buyers fell through before this last one - their home sat on the market for 8 months - they have been in their appartment for 6 months... my son (8 yrs) and I have been tackling their lawn all summer because the boy I set up to mow was less than reliable.... it was good for my son though!
I hope you get some bites on your home - it is such a relief to jump that hurdle - glad the testing went well.
I just stopped driving because my arms are so weak I couldnt turn the wheel.when parking or getting out of a parking space too much turning I knew it was time. But my husband takes me everywhere so I really dont miss it. Pat 1
I had the same concerns regarding driving, my husband used to race cars and had a motorcycle, he seemed to know exactly when to stop. I have learnt to trust his judgement, he seems to be very in tune with his body and the limitations of ALS over time.

I hope you manage to sell your house, we could all use one less thing to worry about...

Driving really is a tough issue for those of us with ALS. It represents independence, freedom and participation in the outside world! I have talked with the ALS Clinic about my driving. I have an AFO on my right foot. they said it is fine as long as I always drive with the AFO.

Each time before I get behind the wheel I ask myself if I should be driving. I NEVER drive past mid-afternoon - because of fatigue. I NEVER drive when it is raining hard or snowing. I NEVER drive more than about ten minutes at a time. I know I will have to give up driving at some point. I am also aware that I never want to be in a position of hurting someone when I am driving - that to me would be the ultimate in irresponsibility. At ALS Clinic I was also told about "driving clinics". We don't have them in small town where I live, but I do plan to take one sometime soon.

Its a different issue for the caregivers of those with ALS. I guess I would say that when you feel others may be in danger because of your spouse's driving that's where you need to draw the line.
Hi Linda, stay positive. One thing I noticed with PALS, acceptance has to be when they are ready. I guess its because of the loss of control. They need to have some sort of control. My Mom and sister were to same way. We went ahead and got what they needed and they told us when. Good luck with selling your home. Thumbs up Norma. Now I need advice, I don't think I should have used by full name, How can I change it to "Thumbs up" Can someone guide me thru. TKs
I can do that. Only if you come to the meeting though. LOL.
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