I hate ALS!

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my3sunz42

Active member
Joined
Sep 9, 2010
Messages
48
Reason
Loved one DX
Diagnosis
12/2010
Country
US
State
wi
City
waukesha
What a week ... the priveledges this damn disease takes away are never ending ... we hit another milestone as my PALs is losing his driving priveledges. I know this may sound small, but it's one of the last things he has. My heart is breaking for him, my boys, his wife, his little ones. Damn ALS - to hell w/you!
 
Yes, it truly isn't fair. I hear you Sweets!
 
I am so sorry to hear about the no driving, I know the freedom to just drive somewhere is so important. My husbands Dr. is going to broach that suject with my husband, he thinks he can drive but with the dementia just tracking a conversation is pretty hard for him, and the body strenght is showing. I am getting a car to accomidate my DH and also my 81yo mom, so holding off until Dr as she says can be the bad guy and give him the news.
 
It ain't small to me and it ain't small to him! My husband is literally making me go insane due to his incessant requests to go here and there, as he quit driving about 9 months ago!

If your pALS was a "go" type person, he will need help in this respect! He will still want to go to his familiar places! So, maybe y'all can take turns?

Sigh...it is very hard. Sending you hugs.
 
No way it seems small. Losing driving was HUGE for Glen... and for me. Up to that time, he'd drive the 5 minutes to the Starbucks our son works at. The kids that work there all knew the order and would just fix it for him, and he'd bring it home. One of our last things that didn't involve me being his caregiver.
 
This was one of the hardest things for my husband. It was in no way small.
 
Thank you for your kind words ... we have already arranged a "Team Taxi" to get him to things like our kids hockey games, football games, out with the guys, etc. For me it's the little things, like him just showing up at our house, seeing him drive by, etc. I can't imagine what's going on in his head. Our eldest has already stepped up to the plate - taking him to visit friends, out for lunch, etc.

I hate to think what's next, but have to constantly remind myself to enjoy what we have TODAY. You guys are amazing. I'm blessed to have this Forum for all the support. Thank you.
 
Eddie has always driven fast cars. Over a month ago we sold his Corvette. He has not driven it for
over a year now. He cried, just for a moment, then I made him smile when I reminded him of some
of his road trips with the gals. :)

Eddie is advanced and is very mature about his condition. I like making him smile. One of these days
he will lol again. Count on it...

God bless,

Jim
 
Thanks Jim! We're in the process of making our PAL smile today ... my husband took him, his little ones and our shared boys out on the boat all day today ... certain to bring a couple of big smiles to his face watching our kids play together.
 
Tom is also worried about the day they take the license away. Ha! Our doctor has assumed that he has just volunteered to quit so the topic never comes up. I always accompany him to the hospital so they think I drove. I may be the bad girl here, but I am not going to stop him from taking his truck out for a spin around the country. His biggest competition on the road is tractor and wagon. He does get mad when I tell him I am driving when we go to town etc. because I DO fear liability if someone hits us and Tom is at the wheel. I don't think insurance is going to stand by us even if he was not at fault. Can't say THIS idea suits Tom very well, but I win the argument every time. I know the loss that will be inevitable though, and cannot fathom how we will get by when he can't get out to tour the neighbourhood. That is all that keeps him sane these days.
 
Driving is something i love, as soon as i was old enough i got my test passed and never looked back, I was obsessed with cars when i was a kid. Just being able to jump in the car and drive was great i never got sick of it. Now i really struggle to drive, my arm strength is not good at all and it is not helped by our car being a manual 4x4, its like a tank! my licence was reduced to 3 years last year, i know i will not reach that 3rd year still driving, its just over 12 months since my licence was reduced and already i'm on the verge of surrendering it, gutted is not the word, its a killer, i will miss it so much.
So many things you love to do get taken away in such a short time.
 
Mom was one to always give me the keys, especially as she got older. But when she was having a hard time driving, she actually insisted on driving, I guess she knew it wouldn't be long until she couldn't. One day because my fear of course was for mom but other people. too I said one day it'd be ashamed to let ALS kill some innocent little kid, don't let someone else decide its time for you to stop driving, you decide. Perhaps only a few days later that was it, mom never drove again and we never spoke of it again. Onl yonce in a while she would tell me to have the oil changed on her car.
 
DITTO. What a dumb disease.
 
My husband has been very good about just NOT driving. As when we investigated insurance issues , it seems that even if he were not at fault he could get blamed because of the ALS. He does miss getting up and going about doing boy things but has not been bitter about it. It is a loss of independance though which adds to the daily frustration. Just another kick from ALS.
 
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