Driving Advice - please

[DonnaD]

Hi -

I'm 51 yo (diagnosed at age of 23). I've been driving since I'm 17 years old. Over the years, I slowed down and 5 years ago, when my daughter got her license, I totally stopped driving. It basically got too overwhelming for me. I didn't really go out without my husband or daughter so I just stopped except some very short distances to pick something up. Driving became scary. I can't explain but I hope people here understand. I'd sit in a car with someone else driving and just couldn't imagine me speeding so quickly along.

Two years ago was really the turning point since we got rid of our "old clunker" and bought a 2008 car. During that time my legs have been getting weaker/numb-er. I still walk unaided, but slowly and short distances. I got in the new car for a 2 minute drive and it was so different than my old clunker. When I stepped on the gas the car shot out, when I stepped on the brake it came to an immediate stop (I know a car is supposed to do that but my old car was gentler.) I drove 2 minutes and pulled over and called my daughter to come get me and the car. I was really afraid that I wasn't in control of the gas and brake since I didn't really feel them.

Since then, I haven't driven at all. So now I decided that I need a car with hand controls. Where I live (Israel), I had to go to the ministry of health to be tested for driving ability (eyes, psychological...) so they gave me permission to drive but only after I pass a test on a car with hand controls. Once I do that they will pay 95% of the cost of installing hand controls in my car. Till I pass that test, my old license is invalid.

So now I started these driving lessons. The teacher assumed that if I've driven for so many years before, it would just be a matter of getting used to the hand controls.

But that's not the story at all. Even before my legs (or the new car) were the problem, I had basically stopped driving. The driving teacher keeps asking why I'm so negative and I can't really explain (to myself too) why I don't want to drive. I really only want to be able to drive 2 blocks to the store but they don't give driving tests like that. We practice driving through streets with traffic and I just want to sit in the passenger seat.

I remember a few years ago (more than those 5 years) being at a neurologist appointment with my husband there and he asked the neuro why I don't want to drive. What is bothering me from driving. He didn't have an answer.

I think I'm wasting a lot of money on these driving lessons - that I'll never be good enough for a road test. I'm afraid to drive fast. I really just wanted to be able to go out to buy milk - a little independence.

I'd love to hear other people experience with driving and what is preventing me

[toot2818]

driving

I was having trouble with the gas and brakes to and didn't want to stop driving. I looked into getting hand controls. In Wisconsin you have to take lessons from an approved teacher. After 6 times out I felt good and we had the controls put in our car. Then I had to reapply for my drivers license. That was a real trip. Had to take the written test and then a road test.

I passed it all and can drive

You need to check with your local DMV for what your state requires.

My husband can drive the car, just locks the hand brake and takes the cover of the gas peddle.

good luck,

Toot

[Cat Mom]

Wow! That's so scary. I don't know if I'll be of any help but here goes... firstly I must tell you that I stopped driving in. 2005 due to MS (visual, or lack thereof) but approx 15 years before, I suddenly developed debilitating driving anxiety. Never been in a bad accident.

Like you, it came out of nowhere but when it hit, I would have to pull off the road, air conditioning blasting, shaking, etc. Then, after calming dorm, anxiety would set in for the trip home. If I drove to work, I would fret all day about driving home.

I didn't know what it was and thought I was just losing my mind but finally had to see my doc about it when it hit one day and I blacked out in Burger King parking lot with my 3 small kids and was taken to the hospital in an ambulance.

Once 'it' had a name, driving anxiety, my councillor worked to try and get me back on the road. One thing was called 'the 2 hour window", with practice (lots) I was able to worry my head off until 2 hours before driving then for that 2 hours I had to head off worry with sensible thoughts, whether I believed them or not!

There are lots of other methods and I urge you to get help with this. The independence of driving is worth it. Perhaps if someone you trust practices the scary routes with you... you can find "a way out" if needed. I bet you'll feel more secure if you do it quite a few times. I was always better if I knew a way out. Sometimes it was a parking lot, other times streets. After a while, fear greatly diminished. You only have to do this until you pass your test, then go back to your regular store runs!

Please keep us posted, I really feel for you. Good luck!

Jen

[pennstater]

I think driving is one of those things, the more you do it, the more comfortable you are. Do you have any vision,visual spatial, or cognitive symptoms that may be adding to fears?

For me, driving represents my independence. When I have been restricted in past, it really was difficult mentally. If you only want it infrequently for short trips, maybe this is playing into it as well for you?

I have issues with night driving now and also driving fast. Hard to believe I have driven in NYC and Philly regularly, DC, and in Munich, Paris, Dublin, and London. Now the thought of driving at night or outside the neighborhood terrifies me. And forget narrow roads...I could go on and on

I hope you do get a handle on your fear and wish you luck with the drivers testing.

[AnneLouise]

I stopped driving because I don't want to hurt anyone.

I have some numbness in my feet but I can still feel the pedals. It is my reaction time that has slowed considerably. Driving, especially fast driving (I can't imagine merging!) requires split decisions and quick movements. I just don't have it anymore.

Slow driving gives me extra time, but still, it fills me with some anxiety. I really have to pay more attention.

I dislike giving up driving and the feeling of independence, but I don't want hurt someone so I have to get the independent feeling doing something else.

[DonnaD]

Thanks for the replies. I think I have so many of the problems and it's hard to figure out what is what. I think since I got married (in '86) I got less confident in my driving and I'm not sure if it was related to my MS or not. My husband is one of these very confident drivers, drives relaxed with one hand, always knows where we're going (way before GPS)... I always drove with 2 hands holding tightly to the wheel... So he always drives and I did less and less driving.

My vision field is MS affected a little but not that much. I pass eye tests no problem but maybe that gives me a feeling that I don't see the full picture so well and that's why I find driving overwhelming.

It's a problem that I can't practice anywhere than with the teacher since I don't have access to a car with hand controls till I pass the road test (I don't have to take another written) and then put it in my car. So my practice is on busy skinny streets cause that's where the lessons are (I'm not comfortable on tight streets either). Then, I hate driving with only one hand on the wheel. The blinkers turn on with your thumb on the gas (pedal?) and you have to switch it off too (it doesn't go off automatically like a regular car does). My fingers are a little numb (something I'm used to that doesn't affect too much), so I have problems turning the blinker off (I always turn the windshield wipers on since it's the same finger).

I know I sound pathetic. But I don't multitask well and there's so much to think about when driving. And, the problem is that even if I pass, I'll do so little driving (how often can I go buy milk?) that I'll never get comfortable with it. The driving teacher keeps asking why I'm so negative. He's a special teacher for handicapped people but he thinks I just have leg problems even though I told him I have MS but, he can't understand the full picture.

I do have another option instead of driving. I live in a very very small town (the lessons are in a city), I know I'll never drive out of my town (unless there's a miracle), so instead, I can get a golf cart. A lot of the elderly people have them. That will really be enough for getting out locally. My kids have been pushing me to get one for a while but it will make me feel so handicapped - I know, I'm being stupid. I think that's really the best solution and I'm just so annoyed with myself for invalidating my current license - even if I don't use it, I hate to give it up.

Sorry I rambled on and on

I really appreciate all the experiences and advice that you gave

[KatieAgain]

I do have another option instead of driving. I live in a very very small town (the lessons are in a city), I know I'll never drive out of my town (unless there's a miracle), so instead, I can get a golf cart. A lot of the elderly people have them. That will really be enough for getting out locally. My kids have been pushing me to get one for a while but it will make me feel so handicapped - I know, I'm being stupid. I think that's really the best solution and I'm just so annoyed with myself for invalidating my current license - even if I don't use it, I hate to give it up.

You just stated the solution to your problem.

I do not drive when I am in a flare. My car turns into a 4,000 pound torpedo. I could kill someone.

I live in a gated golf course community. We have shopping within the Community and we can drive our golf carts anywhere. I moved here specifically because of that...well I like to golf too.

I still drive when I am not in a flare...but I love my golf cart! Its awesome!!!!! I actually probably drive it more than my car.

There is a good reason you are overwhelmed about driving a car. Take that worry away and get a Golf Cart. Best solution there is.

[rdmc]

Hi -



I'd love to hear other people experience with driving and what is preventing me

I don't drive very often. If I do, I make sure there's a route to get where I'm going that doesn't not have high speed driving, in other words, I avoid the interstate or any heavily busy thoroughfares.

I was just speaking with my physical therapist this week, and driving came up. He said with many MS patients, the difficulty in driving not only comes from a foot or leg not cooperating but it is a proprioception problem.

Proprioception can make you feel lightheaded, or slightly dizzy, while driving, especially if you're in heavy traffic with cars buzzing by on either side of you.

His explanation was much more involved, but it made sense. From what I gathered, it's also similar to the
Walmart Syndrome...too much data going in at one time, and our brains have problems processing it all.

[gomer]

I drive a lot, all sorts of traffic.

I do have one suggestion; Start SLOW and take it slow about advancing your driving. In other words don't rush it, just progress slow and steady, one baby step at a time.

Depending on where you live and terrain conditions between you home and where you want to go, a good scooter might also be a viable option for SHORT distances. Of course golf carts are also a very good option, even better than some mobility scooters for some areas.

Years ago, before my MS Dx and starting Copaxone, I had instances in distant cities where even in broad daylight I found myself wondering why I was where I was. I took a break, regrouped and got back on track, no problem. Thankfully it has not happened in recent years.

Gomer

[DonnaD]

He said with many MS patients, the difficulty in driving not only comes from a foot or leg not cooperating but it is a proprioception problem.

Proprioception can make you feel lightheaded, or slightly dizzy, while driving, especially if you're in heavy traffic with cars buzzing by on either side of you.

I think this is it. I never heard of proprioception but that best describes what I feel. (I'm going to read up on it or ask the neuro).

I don't live in a golf community but I do live in a somewhat closed community (lots of young people here), our streets are slow (except when the kids drive ) and it's really acceptable for (old) people to drive those carts. I've just been stubborn.

I'm annoyed that I didn't come here before I invalidated my license and started these hand lessons. I spent a lot of money on the ministry of health test (since that's how I would get the hand controls paid for) and on lessons. Today I have a lesson and I'm going to make a decision (though I guess I'm going in with the wrong attitude).

Thanks everyone (I'll let you know what I decide )

[hunterd]

i know exactly what you mean! i quit driving voluntarily driving about 7 years ago because i was afraid i no longer had the reflexes needed to avoid anything that happened quickly. i think it may have been one of the wisest decisions i`ve ever made.

[DonnaD]

Right, that's it! - I don't have the reflexes. I just don't feel like I'm in control of everything around me.

I had another lesson today. I couldn't wait for it to end. I've had 6 or 7 lessons with hands and I'm not getting better at it. I'm just really sorry that I even started. I gave up my old valid license. I paid $200 for a test that said I must have hand controls so that they would be paid for. I didn't have to give up my license. It was my idea. I now paid about $350 for lessons...

My daughter asked me why I need my license. I said in case I want to move the car. She said I won't - she's right but I still hate to lose it.

But now that I've actually taken the step of getting rid of my license maybe I'll take the step and get a golf cart. I've basically been stuck at home unless someone drives me cause I can't really walk more that 300 meters (can push it, but what's the point?)

I hope I can handle a golf cart

[KatieAgain]

I think you are going to find driving a golf cart fun as as all get out! I truly love my golf cart. They also have golf carts that can be adapted with hand controls and swivel seats.

Make sure you try one out before buying. They are expensive.

[DonnaD]

I did it!! I got a golf cart. Merits brand. It's perfect for me. Seats 2. There's just one lever to hold and you only leave go to stop - No brakes or thinking...Just leave go. It would be better if the streets had fewer potholes and if we didn't have speed bumps cause I have to lower the speed for any bump. Even my (cool) kids drive it when they're carless . I only let the kids who have driving licenses drive it. We live in a very very small town with very little traffic especially midday. So far I've gone to the Dr, the library, to the supermarket, to visit my sister-in-law a few blocks away... It's not too great if it's raining or cold (it has a plastic rain cover) but I live in a pretty warm country. I have a feeling I won't like it much in the summer (no a/c) but for now it's great!! Thanks for all the encouragement.

[pennstater]

That is great to hear. I am sure it restored some independence for you. Enjoy it.