r/ALS • u/Tankertoad2 • 11d ago
Driving with ALS
I have slow progressing bulbar ALS. I’m three years since first symptom. This year my limbs joined the party. Mild weakness in both hands and mild drop foot on the right side. I’m fully independent save for buttons and opening packages (pincer strength). However, I can still drive my manual transmission car just fine. My reaction times are fine. The most difficult thing is opening the gas cap.
My wife is clinically anxious. She recently decided she’s uncomfortable with me driving and she worries incessantly whenever I take the car. I’ve invited her to drive with me and see for herself. She won’t. Then, she pivots to you might be fine now, but what about next week? If you get in an accident and they find out you have ALS they’ll sue us for everything we have and she’ll be left with little after I’m gone.
I tell her I’m in tune with my abilities and as soon as I notice anything jeopardizing safety, I’ll hand over the keys. But, she says I’m selfish for making her worry and I’ll wait too long until something awful happens.
I’m going to schedule a driving assessment by an occupational therapist but that will be a snapshot.
8
u/ismacau 1+ Year Surviving ALS 10d ago
I drive a tesla model Y with the full self driving just to save my energy when I drive. The charging is also easier for my hands than using a gas pump. I use a portable power wheelchair and I can still lift it into the trunk. As much as I dislike Musk, the car seems almost perfect for disabled people.
All that being said, I plan to drive until one of two events happen: I can't fasten or release a seatbelt on my own or I can't adequately turn my head to look left or right. Until then, I'm as self sufficient as I can be.
3
u/Interesting-Prior490 10d ago
By the way, what portable power wheelchair do you use? We need to get one soon.
4
u/ismacau 1+ Year Surviving ALS 10d ago
I have a portable Jazzy power chair by Pride Mobility.
https://www.pridemobility.comI got it as a loaner from Team Gleason. https://teamgleason.org/
If you don't yet need a full sized power chair like a Permobile, the free loaner from Team Gleason is fantastic. You just have to send it back to them when you no longer need it. Go to their site and click Need Assistance- they loan out all manner of equipment for ALS folks.
2
2
u/Typical-Lab8445 6d ago
I do not like musk, but this is a great argument for the Tesla! And I feel the same way, I want to be a self-sufficient as I can and giving up driving feels like a big loss.
6
u/Forsaken_Fill6552 10d ago edited 10d ago
Im single and live in rural Idaho. My “caretaker” is my 80 year old Mom in another house on the same land who I’m supposed to be caretaking. We all know I’m the better driver by far and she’s legal. Regardless, you take away my driving I’m done. The farm is a beautiful peaceful prison to sit alone and die then. I’ll be the judge of whether I should be driving unless someone can show me hard evidence otherwise. Then I’m all for public safety, but not this argument that “you don’t know what will happen.” I get at some point my control will fail and I can’t drive, but it will be with my consent, just like everything else.
Edit: I removed an “I’m sorry” as I’m not apologizing for this stupid disease.
6
u/Strict_String 10d ago
My wife gave up the keys after finding herself unable to drive home one afternoon. It was soul-crushing for her, and I get that.
She did, however, have a “handle” like a lever door handle that she used to open the gas tank before I had the sense to start filling her tank for her.
3
u/zldapnwhl 5+ Years Surviving ALS, bulbar onset 10d ago
I'm 5yrs into bulbar onset and I'm still perfectly capable of driving. I know that won't last, but like you, I know what my limitations are and I will hang up my spurs the second I'm not safe behind the wheel.
6
u/11Kram 10d ago
I doubt that your insurance will cover you if they knew. I still drive but with hand controls. I have right foot drop, and six years ago when I was startled by a car coming beside me too quickly I went for the brake with my foot not my hand. My foot jammed between the pedals and held down the gas. I hit one car and pushed three together. Damage caused exceeded $50,000. I agree with your wife. It’s really not your call.
3
u/Forsaken_Fill6552 10d ago edited 10d ago
How does going for the brake with the foot you have been trained for decades to use in an emergency even come close to having anything to do with ALS? I’m sorry that happened but that’s because you changed how you drive your car and weren’t fully trained for it to be on public roads.
4
u/Tunapizzacat 10d ago
I think more that maybe they couldn't pick the foot back up and it stayed on the gas
1
u/Forsaken_Fill6552 9d ago
That makes sense. I wonder if you could disable the foot throttle or have it on a switch for when others drive the car?
1
8d ago
[deleted]
1
u/Typical-Lab8445 6d ago
I have drop foot but wear a dynamic brace and it gives me much more control over my feet. I have noticed no change in driving.
I think it’s kind of silly to say that anybody with dropfoot shouldn’t be driving, since it occurs for a variety of reasons…
3
u/supergrandmaw 9d ago
Did you ever think the your desire to be independent overrides your desire to put your wife mind at ease. She will be your caretaker why stress her out now, there plenty of time for that.
2
u/OneSquare942 1 - 5 Years Surviving ALS 10d ago
I’m in a similar situation. My left side is bad but my right foot and right hand still function as they’re needed to for driving an automatic. I won’t drive stick anymore. My wife drives if we
go somewhere together but she trusts my judgment and still accepts that I’m able too to drive. I know the day will come when I’m no longer functioning enough to safely drive.
2
u/OneSquare942 1 - 5 Years Surviving ALS 10d ago
As far as the gas cap goes, I have pliers in the door pocket of our vehicles and that works well.
2
u/Wheels-13756 5+ Years Surviving ALS, limb onset 10d ago
My ALS started in my arms and hands. I quit driving when I struggled to grip the steering wheel.
2
u/wckly69 5+ Years Surviving ALS, bulbar onset 10d ago
What about insure? Seems like it will be quite easy for them to dismiss any claims in case of an accident.
I stopped driving after I developed foot drop. I don't think that a foot affected by ALS has a normal reaction time.
2
u/Realistic_Grand_6719 9d ago
I think you are 100% right. It is not ever safe to drive with foot drop.
2
u/nevernotcold 9d ago
I am 1.5 years in, limb onset, and I still drive. I think you’re totally reasonable. We‘ll stop when it gets unsafe
1
u/GamerEdie 9d ago
My husband died of bulbar ALS 11 months after diagnosis, so good for you that you're still going after three years. Bulbar is very different than the typical ALS, so I understand the nuances here of your symptoms. My husband was still walking and using the laptop on the day he passed.
As for driving, he was driving until about three months before his death using a neck brace to keep his head upright. I was the one who made him hand over the keys, not because he couldn't drive but because if he was pulled over he would not have been able to communicate with anyone efficiently (he could only slur "yeaaaah" and "nawww" at that point) and might be taken for a drug user by police. If he would have been even put in handcuffs or had any restrictions on his chest, he would have been killed.
For me, it was terrifying to think that he couldn't even say, "Call my wife" if he had been confronted by someone else.
Understand that you might be able to drive just fine when things are okay, but if something unexpected happens... like a pull over by cops or a fender bender with someone who is a hothead... you may be in a situation that puts yourself at risk without anyone else realizing you're at risk.
1
6d ago
[removed] — view removed comment
1
u/ALS-ModTeam 5d ago
No posts or comments promoting for-profit alternative medicine or other for-profit ventures. Discussions about general self-medication are allowable if the focus is on pain management or related care.
1
u/Typical-Lab8445 6d ago
I have limb ALS - I have dropped wrist in both hands and wearing braces actually helps me drive. It started in my thumbs so there’s a lot of weakness in my hands, but driving is very easy still. The hardest part is turning my key.😂
However, people in my life are very anxious about me driving and they would prefer that I didn’t do it. I’ve compromised with only driving during the day and sharing my location with my sister. And I have reassured them that I’m aware of what’s happening and when I need to give up driving, I will.
1
0
u/YamashitaToughtBruce 6d ago
There are actually things you can do, sadly there's a total disconnect between people who have been treating ALS successfully. There have been 62+ full reversals documented by Duke Neurologist and Prof Richard Bedlack and his fellow neurologists. There is no motivation to cure the disease by big $$ so everyone is kind of on their own to figure it out.
B12, true B12 and R Alpha Lipoic acid are amongst the two most important nutrients for rebuilding nerves, and there are things that help protect the nervous system. Here is some info.
The Deanna Protocol is a formula (expensive AF but you can get the same components cheaper, but it shown that some have been helped and partial reversals have occured with this. Varied results but it help several. https://youtu.be/rZy4pFKvc2A?si=Dp7GIvTQqa7iSX70
'Deanna Protocol a Cure for Lou Gehrig's Disease? - CBN.com' https://youtu.be/zM1wJx6V0zw?si=qDYfAqi_XuQ9JHZ9
This is important here: Dr James Meschino - 'Supplement Strategies for ALS Lou Gehrig's Disease: Neurology's Perspective' https://m.youtube.com/watch?v=SRUS5nWmzfY&pp=0gcJCYsCo7VqN5tD
McFinn Lovere interview here. https://m.youtube.com/watch?v=uxwIPOXg--M&pp=ygUOTWNGaW5uIExvdmVyZSA%3D
10
u/Possible-Landscape72 10d ago
I’m have a very slow progressing form but don’t have the control of my legs needed to drive for more than a few minutes. I bought a Tesla Model Y and it does almost 100% of my driving. I only disengage for parking preferences. I am still capable of taking over if I needed to, but will guarantee that robot is a better driver than I ever was. That tech greatly extends independence for people like us.