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
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