Driving & ALS

Pidge · 11-05-2009, 06:38 AM

On our last visit to the Cleveland Clinic my sons Dr. advised him not to drive. I was really taken back by this. I feel completely safe when riding w/ him & often have him run errands for the family or somtimes just drive me on errands. I feel this is away he can contribute to the fam & still keep some independence. Just wondering what everyones thoughts are on this?

paleshia · 11-05-2009, 06:52 AM

why did they give that advice, what are his limitations?

i wonder too when i will have to call it quits......i can't get my self out of the car with my left hand, and i am a little slow making those big turns like when you park, but i can still drive well, and i think, safely.

BethU · 11-05-2009, 06:53 AM

I kept driving until I felt it was unsafe to do so. The thing I first noticed was having to take both hands off the wheel to move the gearshift, and laboring to turn the wheel when the car was moving very slowly (like backing out of the driveway). Knowing how ALS progresses, I knew I was losing strength on the steering wheel when the car was moving faster, too, even though I was unaware of it yet physically.

I also was aware that my perception was not as all-encompassing as before. Maybe that just happened to me, but I felt I wasn't picking up peripheral vision details as well as I normally would. My overly brisk reflexes worried me, too, although I didn't feel their effect in my driving. I knew the day was coming when I couldn't drive any more, and I wasn't sure how to tell when the time was right to quit, but when I found that even a short drive ... a mile to the grocery store ... left me exhausted, I decided that was it. I asked myself, "Would I want to be on the road with someone as impaired as me coming at me?" and the answer was no.

It was a relief to stop. I used to love to drive, but I find I can manage perfectly well without it, even in L.A. I'm glad I stopped BEFORE something terrible happened.

That's just how it was for me. Everyone can assess their own capabilities.

Pidge · 11-05-2009, 07:19 AM

paleshia His only limitation would be leg weakness & rigidness in the legs. They were letting my 80 yr old mother drive when she was practically blind I finally had to take her license. The BMV was even willing to let her retest again & again until she could pass I'm just saying there is alot worse dangers out on the road than ALS. We have people who drink & drive they keep giving them chance after chance thats the biggest joke of all.

GlenBrittle · 11-05-2009, 09:13 AM

Pidge,

Get back in touch with that doctor. Find out if they have notified the DOT. Here in Canada , if they make that determination, they are supposed to notify the DOT.

I have spoken will all of my doctors and told them it will be my decision as to when it becomes unsafe. It is something I evaluate every time I get behind the wheel.

Glen

Pidge · 11-05-2009, 09:42 AM

Glen as far as I know the Drs. do not have any say but his Dr. said we could set him up for a driving evaluation at the Clinic we said no thankyou, I would never let him drive if I thought it wasn't safe for him or others on the road I know my son feels the same way.

Katie C · 11-05-2009, 12:26 PM

Pidge... just curious.. are they concerned about physical or mental limitations. Glen might still be able to drive physically, but because of his FTD, he processes far to slowly to be safe behind the wheel. He admitted that it was getting harder to steer, so we use that as the reason he isn't driving, but really it is his ability (or inability) to react in an emergency situation that keeps him from being behind the wheel.

Pidge · 11-05-2009, 01:02 PM

Katie, My husband just thinks the Dr. is being over cautious his first Neurologist seemed to think he should keep driving & working as long as possible. I was just wondering if anyone else has questioned driving & ALS I would think that driving would be very important to anyone w/ ALS as long as possible. I was just very surprised that his Neuro even brought this up so soon into his dx. I am just trying to keep things as normal as possible for as long as possible. I laid awake last night wondering what we will do when My son can no longer go up and down the stairs. Also he is an adult even though he is only 22 but what does he want? He was all set to go out into the world & start his life we will support what ever he wants within reason I feel like I am getting off the subject thankyou so much for your input I say keep on driven.

BethU · 11-05-2009, 01:14 PM

Pidge ... a driving evaluation would be a good idea, even though you want your son to be independent as long as possible. The doctor may be being overly cautious or he may be thinking of factors that you haven't taken into consideration. If your son is having weakness and rigidity in his legs, that could certainly affect his ability to step on the brakes or get his foot off the accelerator quickly in an emergency.

The evaluation would give you and your son and his doctor the objective evidence to discuss this in terms of providing the maximum safety for your son, which I'm sure is your priority. There may be modifications that can be made to the car to increase his safety and prolong his functioning.

The fact that there are more impaired drivers on the road than your son does not justify risking his safety.

Just my thoughts. I am so sorry your son has been struck with this terrible disease at such a young age. That is tragic.

sigma35 · 11-05-2009, 04:55 PM

3 weeks ago I decided MYSELF it was time to stop driving. I have very little control over
my right foot, and moving from the gas pedal to the brake was starting to get scary. I still
want my independence, but I am concerned with other people on the road, I don't want to hurt anyone.

John1 · 11-05-2009, 05:19 PM

Sigma,

If only your foot/leg is weak and your arms are normal, there is a simple adaptive aid that can put you back behind the wheel. Lots of paraplegics drive safely. Your car can be fitted with a hand control that activates both the gas and the brakes. I have one on my car that I use only for braking. I think I prefer it to a foot brake even if I had normal leg control. It came on my wheelchair van when I bought it from a paraplegic who had no use of his legs at all. I didn't need it at the time but quite enjoyed the ease that the hand control offered.

GlenBrittle · 11-05-2009, 05:36 PM

I have the same rig for my van. I have removed it for time being to give me more space .

Glen

John1 · 11-05-2009, 05:42 PM

Glen, I can't use the driver's door; instead I drive my scooter up the ramp and into the area behind the front seats. From there I step through between the front seats and into the driver's seat. The hand control arm is located to the left of the steering wheel so it is not in my way. It would slightly interfere though if you entered through the driver's door.

Micheline_h · 11-05-2009, 06:06 PM

I stopped myself...i was driving my car (standard) with my son. My als started in my right leg. As we pulled in to the driveway, i almost couldn't stop. scared the hell out of me, and told my husband i was not driving again. At first he thought i was being a whimp...but i wasn't going to be the responsible for causing a crash or worse a death. That was one of the hardest thing i have had to give up...the kids and I would go out every weekend just to hang out

pvale · 11-05-2009, 06:12 PM

Unbeknowst to me, the other day when I came up on someone stopped a little too quickly and really had to jam the brakes on, my doctor was behind me. I had an appointment with him yesterday, and he said I needed to quit driving ASAP. I did already recognize that my reflexes were degraded, so I said OK. Wife can drive. I've got a good 5 mile range on my chair, and, as long as the weather holds, I can get to my Dr, the bank, someplace to get cigs, and the small grocery store downtown.