driving: Dear friends, I have started to... - My MSAA Community

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driving

Sandydemop profile image
Sandydemop
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Dear friends,

I have started to have trouble driving due to weakness on my right side. I can do local driving but i don't trust myself on highways. I have to pick up my leg to move it to the brake. Not ready to stop driving. the cost for hand controls or a left side gas pedal are unmanageable. what do you do? thanks

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Sandydemop profile image
Sandydemop
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57 Replies
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erash profile image
erash

Sandydemop I stopped driving @ 2years ago. My right leg is unreliable but even worse is the overwhelm I feel juggling the incoming stimuli (traffic, emergency vehicle sirens, trains, traffic lights). I rely on hubby for transportation-- who fortunately works from home, but it's crappy to be that reliant on someone :(

Sandydemop profile image
Sandydemopβ€’ in reply toerash

I understand. i'm not in love with the idea of being dependent on someone driving me anywhere either. Interesting point about the stimuli. I'll have to pay attention to that.

NewbieMe profile image
NewbieMeβ€’ in reply toerash

I wasn't aware that that nervousness or overwhelm and with stimuli that you mentioned was is an MS thing I thought I was mentally ill

Sandydemop profile image
Sandydemopβ€’ in reply toNewbieMe

you are not mentally ill

Humbrd profile image
Humbrdβ€’ in reply toNewbieMe

I get overwhelmed with too much stimulus also. Your not alone. I have to retreat to quiet. It does make me feel different from other people. Other than those of some of of with MS. But I've also had social anxiety all my life.

Sandydemop profile image
Sandydemopβ€’ in reply toHumbrd

this is an interesting separate topic. for me it has to do with concentration. I suppose it used to be easier to block out background noise.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Sorry for what you are going through. The mental & physical decisions must be difficult. Keeping yourself and others safe is most important. I am driving less and less these days. Mostly because of high gas prices, but to be safe too. Like erash says in her comment, you might need to depend on family and friends for transportation.

Sandydemop profile image
Sandydemopβ€’ in reply toCalfeeChick

thanks CalfeeChick i think it's asking a lot of a friend. Yet, I know they would be happy to be of service. ugh.

CalfeeChick profile image
CalfeeChickCommunityAmbassadorβ€’ in reply toSandydemop

There might be something you could do for your driver... offer to pay for gas, buy lunch, gift card. Make a treat.

Sandydemop profile image
Sandydemopβ€’ in reply toCalfeeChick

agreed. good ideas thanks

NorasMom profile image
NorasMom

I basically stopped driving 3 years ago, although I still can *sometimes*. I can't go far, avoid the highways, and don't do rain or after dark. I just don't trust myself anymore.

It was very hard at first, because I still lived alone then, but my kids and mum were able to handle my doctor's appointments, and I began ordering groceries online. My boy's with me now while we try to figure out what's wrong with him, so when there are unavoidable drives we discuss which of us is better able to handle it. I think I've only driven twice in the last 2 years.

For distance driving, we rely on a good family friend who has a van and isn't afraid of cities or wide roads. We cover the gas, and if it's a long trip we also buy her lunch. The only drawback for me is that getting another driver requires planning. There are no more spur-of-the-moment trips to the mall or a favorite restaurant.

My county also has cheap transportation for the elderly & handicapped, as well as a private cab company for veterans or their widows. Maybe see if your area has something like that? The frequent argument that I have with my mother is that I understand that you don't want to lose your independence, but do you really want to be responsible for hurting or killing someone else because of your pride? (I hope that doesn't offend you. She gets mad at me.)

Sandydemop profile image
Sandydemopβ€’ in reply toNorasMom

hi NorasMom i am not offended. You have a point. I don't want anyone hurt but I don't think it's pride. I'm a good driver. We do have something called Para-transit. I have not applied for it...yet. It's kind of wonky. it could take hours to get from point A to point B. I have friends or i could pay someone if i have to or uber if necessary.

NorasMom profile image
NorasMomβ€’ in reply toSandydemop

Yeah, that's why I've hesitated to sign up for our handicapped program. You may have to share a ride. You may be in a private car, or then again you may be in a bus. You might be dropped off 3 hours ahead of your appointment and then have to wait 8 hours to get picked up again. You have to wait by the road for them, and they can be late but you can't. You have to pay with the exact amount of cash when you're picked up. Seems like a lot of fuss and bother.

Back in the day, I drove friends around when they didn't have cars, and the only thing I needed was a bit of advance notice and reimbursement for the gas I used. I know that none of us want to be dependent on other people, but I think that most of us have a wider network than we realize, whether it's friends, neighbors, or former co-workers. It doesn't hurt to ask.

Sandydemop profile image
Sandydemopβ€’ in reply toNorasMom

thanks NorasMom i know you're right about the network. It's very humbling to have to ask though.

falalalala profile image
falalalala

That's exactly why I stopped driving.

My right leg is my bad leg and I started driving with 2 feet because of it. Then I noticed that my reaction time was compromised.

Not good if you're in my path.

Another problem I have is the sensitivity of the brake & gas pedals of newer cars and by newer, I mean 1980's and up.πŸ˜‚

The one car I could drive in case of an emergency is 57 years old and has manual brakes and steering which means that I can feel things better.

The last time I drove I got pulled over for speeding.(I was not in that car) My right foot needs to be blamed for that.

As it is now, hand controls might be a waste as my left hand is injured and my right hand is my bad hand....yet no one can pry a piece of pizza out of them.

I wonder how that would be though? It's take some getting used to but worth it if one has no help in getting around.

jorrell profile image
jorrellβ€’ in reply tofalalalala

One thought on not being able to feel the pedals. On my occasional car it has a 6 speed with a clutch. Since I can't feel my left leg, but it is strong, I could not feel the clutch. I added a 30 pound spring to the clutch pedal so the pedal was really pushing back against me and I could feel it. The problem is that unless the spring is engineered and installed by a specialist, if you get in an accident, it is automatically your fault. So, that car is being sold and I am getting one with an automatic transmission. Since the right leg is better, I will be able to handle the brake and gas with my right foot. The adding a spring is just one idea, but it is important that you feel safe and in control of the car. Having an accident and injuring someone is a lot of guilt to carry on one's soul.

falalalala profile image
falalalalaβ€’ in reply tojorrell

I agree.

I hope your new car works out for you.

Sandydemop profile image
Sandydemopβ€’ in reply tojorrell

thanks, jorrell you have some personal experience with this?

jorrell profile image
jorrellβ€’ in reply toSandydemop

Yes, in the US it would be a good idea to check to see if one of the vehicle modification companies can make a minor change to pedal force rather than swapping pedal locations which can be a costly problem.

Sandydemop profile image
Sandydemopβ€’ in reply tofalalalala

hi falalalala I understand the use of superhuman strength when it comes to pizza. thanks for the laugh

falalalala profile image
falalalalaβ€’ in reply toSandydemop

:)

MsBoo profile image
MsBoo

I too have given up on the "driving independence" over 3 years ago. Husband is retired, so the timing is not too much of a problem. But it took almost 2 years to give up the independence portion of that statement. Very hard even though he asks me every day "what might YOU want to do today?".. I have no family here in town, so family is out.. have 1 friend that offers to take me when we are in a pinch, but I hate as we all do, to impose..

Sandydemop profile image
Sandydemopβ€’ in reply toMsBoo

Hi MsBoo is there a way to do it without imposing?

KarenUSA profile image
KarenUSA

I also have a weak right leg and foot drop. Went to be evaluated for hand controls and it was suggested I try driving with my left leg before adapting the car. I have been driving with my left leg for several years.

Sandydemop profile image
Sandydemopβ€’ in reply toKarenUSA

Hi KarenUSA that is the most hopeful statement I have heard yet. How do you get your foot over to the gas pedal?? And where is your right foot while you're doing that?

Jer29-11 profile image
Jer29-11β€’ in reply toKarenUSA

Ok, I was thinking the same thing! Years ago, before MS, I had a horribly sprained right ankle. I would just drive with my left foot and put my right foot over the middle. I was probably more flexible then though too πŸ˜‚πŸ€·β€β™€οΈ

Sandydemop profile image
Sandydemopβ€’ in reply toJer29-11

Thanks Jer29-11 i could see that. I have tried driving with my left foot. It's an option.

palomino27 profile image
palomino27

I got the hand controls.I got financial help to pay for it like from the MS Society and Foundation.

I lifted my leg with my arm to drive for like 3 years. Never got in an accident but if one did and it was found out you'd probably be automatically 100% liable.

Stopping driving was not an option

Sandydemop profile image
Sandydemopβ€’ in reply topalomino27

thanks palomino27 I am weighing all my options

Sandydemop profile image
Sandydemopβ€’ in reply topalomino27

are you still driving?

palomino27 profile image
palomino27β€’ in reply toSandydemop

Yes, I now drive a Toyota Sienna minivan with hand controls and a ramp that automatically folds out from my group3 power wheelchair a Quantum Q6 Edge. I broke my hip about 1.5 years ago. I walk a little with a walker each day so I can keep up my strength so I can still live alone.

Amore55 profile image
Amore55

It sounds difficult to make that decision. I remember that I was at a point where I thought I would not drive again. Thankfully it got better. I hope you have gotten some good advice here from your family. Love you. Kelly

Sandydemop profile image
Sandydemopβ€’ in reply toAmore55

thanks Kelly. It feels like a huge loss. I did get good advice.

Sandydemop profile image
Sandydemopβ€’ in reply toAmore55

And I really appreciate you and all the others who have shared their experience with me.

Cutefreckles72 profile image
Cutefreckles72

Hi Sandydemop, I stopped driving 3 years ago. My right leg doesnt move quick enough for me to stop on the brakes, and I am afraid I will hit something or someone. My husband drives but he works so he purchased me a mobile scooter and I ride with no problem. πŸ›΅.

Sandydemop profile image
Sandydemopβ€’ in reply toCutefreckles72

Hi Cutie, that's an option too. I have seen scooters I like.

Brindisi1 profile image
Brindisi1

I just sold my car late June. Between soft vision, couldn't feel pedals that good & slow driving(afraid cause road rage & they'd shoot me). Got a lot of money since used car market hot & only had 61 k miles.

In Houston we have Uber & using money I got from car to pay that bill.

A good friend who has same ceramic hobby as me to do transport that. Yes lunch and she refuses gas money. Also service in town for over age 65 & County pays half of your trip cost. Need a deposit. Just get anxious when over hr to show up.

Online grocery shopping a challenge but haven't missed a meal.

The good thing is I don't have to mess with horrible houston traffic

Do miss somethings but attribute that to detaching.

I hope you can discern a good decision & God provides. Hope all goes well.

Sandydemop profile image
Sandydemopβ€’ in reply toBrindisi1

hi Brindisi1 my sister suggested that I use the money I would have spent on car payments on uber.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Sandydemop I had to give up driving over forever ago.. and it suuuucked sooo bad. And I don't think my Dr was amused when I said the car would stop sometime!πŸ˜”πŸ€£πŸ˜‚ but I have foot drop in both feet, so the end for me. It can be a personal decision, for you to think about. Your safety and others is key. πŸ€—πŸ’•πŸŒ 

Sandydemop profile image
Sandydemopβ€’ in reply toJesmcd2

Thanks Jesmcd2 for writing. How are you feeling? Safety is definitely a consideration. What you will think about driving locally?

Jesmcd2 profile image
Jesmcd2CommunityAmbassadorβ€’ in reply toSandydemop

I think you really need to consider your own self? Do YOU feel confident enough, aware enough, to be able to stop on a dime, swerve out of the way? And then there is this... What percent of accidents occur within 25 miles from home?

Explanation 75 percent of traffic crashes occur within 25 miles of the driver's home. It is safest to fasten your seat belt before leaving your driveway, even if you are only traveling a short distance.

dmv-written-test.com β€Ί ...

~Now... I don't know how entirely true this is, I just grabbed it... But the statistics are high~ Sandydemop

My dad or friends will take me shopping, and I just leave cash in the car for them!πŸ€—πŸ’•πŸŒ 

Tazmanian profile image
Tazmanian

I gave up driving several years ago I have weakness in my right leg and some mental issues before I retired on disability I was a firefighter and drove the fire engine before that I drove for work it was very difficult giving up driving thank God for my wife she drives me

Sandydemop profile image
Sandydemopβ€’ in reply toTazmanian

very difficult to give up driving. thanks Taz

Tazmanian profile image
Tazmanianβ€’ in reply toSandydemop

Your welcome

MSbeGone profile image
MSbeGone

Reach out to NMSS to see if they will pay for it or May start a go fund me. You have to listen to your body and STAY SAFE while keeping others safe.

Sandydemop profile image
Sandydemopβ€’ in reply toMSbeGone

thanks!

pamgarner profile image
pamgarner

i am so sorry for you, that is my biggest fear, losing my ability to drive. right now i drive very well even with a broken left foot! I can't stand the thought of losing one more ability in this lifetime. I will pray for youπŸ™

Sandydemop profile image
Sandydemopβ€’ in reply topamgarner

thanks Pam, prayers are always welcome

Sandydemop profile image
Sandydemop

thank you ALL for sharing your experience with me. I am not sure how this will play out but at least i have more information to make a decision. If you would like to keep writing about driving or not driving feel free. I am leaning towards uber-ing. and being very nice to friends as i try not to impose. It is clear that i should not be driving in bad weather, high speeds or long distance.

hairbrain4 profile image
hairbrain4

I only drive if I have to. I quit driving out of town 10 yrs ago. It's just not worth the stress to me. My husband takes me where I need to go.

NewbieMe profile image
NewbieMe

I'm sorry you're going through this. It's been a fear of mine

Sandydemop profile image
Sandydemopβ€’ in reply toNewbieMe

thanks NewbieMe I've had lots of fears. about vision, driving, especially about walking. I can tell you worry does not help. stay strong. exercise every day. that helps.

NewbieMe profile image
NewbieMe

Wow πŸ₯Ί. I'm so glad I read this thread. Omgosh - I ' hurt' my back a few years ago for the second or third time. I was paralyzed, then using a walker. Medical professionals sent me to a back surgeon. I struggled that winter - the winter that the Nomad movie was filmed - I was supposed to be there and in the movie, instead I was alone on remote property with 3 ft of snow and a manual drive car. The back surgeon and I decided that for safety reasons I should give up my stick shift and get an automatic. That was an incredibly difficult time - even a little neighbor abuse and difficulty getting supplies bc of the remote location. I have been so alone with all this --

I'm on a road trip now. Annoyed when sitting still at a campground. I chose not drive on major highways, in bad weather or when my eyes aren't 'clear' (a problem since I was 17 that no eye doctor can figure out)

I was diagnosed with MS in February, like this February 2022. and I have no support from doctors, they aren't checking in, I can't find their Dr code to add to the MSAA app....

WOW, just wow

tompumo profile image
tompumo

Pick up your leg to move it to the brake? NO - this is a deadly hazard to you and others. Stop driving before someone gets killed!!

Sandydemop profile image
Sandydemopβ€’ in reply totompumo

thanks Tom. i hear you

Irishgirl76 profile image
Irishgirl76

Late but not that long ago, 4/5 years ago I knew it was coming. I was a home health aid and traveling on busy route all day. My left side started years ago working down the shore. I didn’t know, I just wanted to pull over and now years later I have drop foot and wheelchair. Pay attention but don’t give up until you are ready. Talk soon

Sandydemop profile image
Sandydemopβ€’ in reply toIrishgirl76

thanks Irish. how are you managing?

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