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MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,598
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Darlene Long
10 hrs
Most of us can remember the euphoria we felt when we passed our driving test and suddenly, the world's door was opened. Freedom. Hello World, here I come!
Maybe all those teenage hormones flowing heighten those feelings of freedom, but being able to get yourself from point A to point B, especially when you live in a rural area, was a Rite of Passage into adulthood.
And then, on the other end of our journey through life, comes a time that few of us, (still adults wanting freedom), want to face. There is no euphoria when you have a Neurodegenerative Disease that weakens your body or clouds your thinking and strips you of the ability to drive.
Sometimes I think it is more difficult for men. Sorry if that seems sexist. Roger was our driver, I was the GPS before GPS came out in electronic form. I usually had a map, (or two), spread out on my lap on long trips. He was a safe driver, sure of his capabilities, and quick to react to critters in the road and the poor judgement of other drivers.
ALS changed everything. Response times, lifting his foot to hit the brakes, steering the car/truck; they all slowly changed. It was so hard for him to accept that his body would and could no longer do what was necessary to drive safely.
Gradually he started letting me drive. THAT was probably the hardest for him, even discounting the typical jokes husbands will make about their wives driving.
On one early trip to Massachusetts General Hospital -we were going to get a second opinion and become involved in a clinical trial - I had driven the first four hours through Vermont and New Hampshire. We were getting into heavier traffic, 4 lanes going into the North side of Boston, when he suddenly said, "Pull over into that gravel covered area." I did, thinking maybe he needed a quick bathroom break, but that wasn't it at all. My hesitant driving in the heavy traffic was driving him crazy so he got out and came over to the driver's side and told me to push over. As we pulled out into the traffic, I started crying about the whole thing. I told him he had ALS and still was a better driver than I was. We then laughed but it was more than just that. It was also because our roles had been switched and would never be the same. Sigh.
Sometimes a doctor or the staff at an ALS Clinic will tell their patient that it is time to stop driving. They may even, by law, be required to notify the state licensing division to have the patient take a driver's test to make sure they are safe and able to drive.
When we received notification for Roger to go take that test, he decided not to take it, and just stopped driving. It was my turn to drive and his to navigate. (Fortunately we did get an electronic GPS and we had dear friends to drive us into Boston for his clinical trial appointments.)
For most of us, the time will come when we have to recognize and accept that we are no longer able to drive safely for ourselves or others. For some it will come earlier than others, and it will probably come for many different reasons other than ALS. Family and friends may be wary of saying anything at first for fear of hurting us or creating problems. But they should speak up if we don't or if we are unable to make that decision. Lives may depend on it.
Tough decisions, tough times, but if we hold onto each other and make decisions with love, we can get through it.
i'll end with this ... I've never heard that we will need to drive in Heaven, but I have heard that everyone will have Freedom to move on their own. Maybe wings on our feet so we will be able to get from point A to point B, and definitely feeling euphoria
 
Max, you are right about the feeling of euphoria when you pass your driver's test as a teenager, and are free to drive anywhere your car will take you. I remember the moment as if it happened yesterday. My husband will no longer let me drive, even though I think I still can. With my right leg getting weaker, and my left leg gone, he's probably right. It is sadly another "letting go," as so much of ALS entails. But like so many of us here, we learn to let go with grace, to not allow our losses to rob us of our identity, or our joy, as hard as they are. For me, there have been greater losses in recent weeks: the loss of being able to walk at all, the loss of playing the piano, the loss of my teaching career with all my resources, and the loss of cooking/entertaining as I knew it. The loss of driving is huge. As I reflect on these losses, I am reminded of what a full life I had all these many years. I think, too, of what I still have to be grateful for...the list is long, and includes the many wonderful PALS and CALS I've met on this forum whom I admire for their courage, humor and grace.
Charlene
 
Oh Charlene...."outsiders" see us for who we are now, not all that we have lost. It is very hard, this loss of what we can do...however, it cannot take who we ARE. That's the difference that I tell myself daily.

I was very glad when the doctor said no more driving. I knew it was getting harder and harder to drive, but because of the kids and wayne working shift work I felt I had no choice.
Granted it is hard, coordinating family and friends for school and sport drop offs, but we manage. I'm choosing to stay safe, I guess.

God bless, Janelle x
 
Interestingly I spoke to my wife yesterday to tell her that I needed to avoid driving in heavy traffic as I am not able to react quickly enough. Thursday we drove to Toronto, I drove while she worked. At one point in heavy stop and go traffic I nearly ran up a trucks tailpipe. She let out a scared sound and I just looked at her and said "how did that happen" I was genuinely confused. I have never been in a car accident in over 30 years of driving. My head is to cloudy and my hands and feet to clumsy. We both know that when I said "heavy traffic" I meant that the b1tch has taken something else away from us, but there is nothing we can do about it.
 
>I meant that the b1tch has taken something else away from us, but there is nothing we can do about it

Ditto that!
 
Peter, yet another reason why ALS sucks! Being such a busy weekend in the USA, reflexes would have to be optimal, it would freak me out to drive in the stop/start conditions you found yourself in.
I'm so sorry that happened to you...please, is your wife driving home?
Take good care,
God bless, Janelle x
 
Please Pete, when your wife is driving, don't criticize or critique it. It is very frustrating to be driving in those heavy traffic conditions with "help" that isn't helpful.
 
Yes my wife is driving and she is a wonderful driver.
 
Awesome Peter. The plus side to not driving...you get to be in charge of the radio!
J x
 
Yeah Pete! Glad you like her driving! Toronto is amazing!
 
I am still able to drive safely, but know my time is coming. I have vowed that I will relinquish this cherished task with as much grace as I can muster when the time comes.

Until then, I am driving as much as I can.

My wife is all checked out in the van and has driven it enough to be comfortable with it. She is a good driver, and I am sure I will make an outstanding backseat driver:)

Steve
 
My wife is all checked out in the van and has driven it enough to be comfortable with it. She is a good driver, and I am sure I will make an outstanding backseat driver:)

Steve

Awesome! Don't stress...I have PLENTY of tips for you if you need them!
J x
 
My BJ is handing in his license tomorrow, he was given 6 months, 6 months ago and has decided due to hand cramps ,leg cramps and exaggeratied fright reflex, he will not to apply for another 6 months.
 
car sickness is my problem if not behind the wheel. any one got suggestions. dramamine works but i don't want to take it all the time. thanks chally
 
Chally that is so not fair!
I wonder if it's something to do with that good old independence?
I used to suffer, but the longer I go on not driving (nearly 12 months ) the better it gets.
I never sit in the back. That's a combination of car sickness and being too tall to navigate the back seat with one useless leg.
Maybe start with short trips, and keep a track of what makes you feel unwell. Turning corners etc. Wayne has had to adjust a couple of driving tatics. Plus I NEVER sit in the car whilst my mum is trying to park!
Plus, no matter what the weather, I have the air conditioning on cool. Easier here than there I'm sure, but it helps.
Don't read in the car, don't bend down to pick stuff up off the floor and don't turn to face anyone in the back. No texting etc. Judt eat lollies and enjoy the ride! Also, the passenger is in charge of the radio. Got to be a plus!
Good luck with it.
God bless, Janelle x
 
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