Hi, sort of a lurker here. My son Seth will be two this month. He was diagnosed with CP about 6 months ago so I am still getting used to things and I will have these sudden 'lightbulb' moments on occasion and wanted to ask about this on. Seth has spaciticy/dystonia (something!) in both legs but much more in his right leg. He doesn't appear to be cognitively affected (that we can tell) and he is a genrally happy, active little guy. His fine motor is good and he seems to operate prety well with both arms and hands.

My lightbulb was "OH, I guess he'll always have to have an adapted car." Is that true pretty much? I dont see how he could ever drive safely with all that increased tone in his legs.

So what are the guidelines for that? Anyone here drive an unadapted car or if an adapted one.. what is that like? How hard is it?

Thanks for your insights,
Laurie (mom to Jackson and Seth)

Hi Laurie!

I drive a regular automatic car with standard controls/pedals and such. I haven't had much trouble aside from my occasional moments, though driving does make me tired and stiff. However, I don't have dystonia, and I could see how that might be a problem for Seth down the road. Maybe when the time comes you should call your local UCP office and they can set Seth up with a driving eval to see what he'll need.

edited to add that I have spastic quad CP :)

Laurie,

I have spastic diplegia. I can drive using my feet if I absolutely have to, but I have to do it two-footed. I much prefer using hand controls--it requires less thought, isn't exhausting, and I'm sure it's safer. It's a very natural feeling, as the control has the same tactile feedback/sensation as the pedal. Any car with an automatic transmission, power steering, and power brakes can be equipped with hand controls. Parts and labor are a little over $1,000 to have them professionally installed. The three major car companies offer $1,000 reimbursement for installation of equipment on any new vehicle (purchased or leased). I'm car shopping right now, and see a 2005 Impala in my future...

A car with hand controls can also be driven using the pedals. In fact, I insist that when other people drive my car that they use the pedals. Just because it's easy for me, doesn't mean that it's easier for someone else. Since one hand is always on the control, that leaves only one hand on the wheel. So, you have to have a spinner knob. They're illegal for everyone, except those of us who drive with adapted equipment! I mounted mine at 5 o'clock, and it really cuts down on hand and elbow fatigue.

It's nice to hear that you are thinking of these things now. I think the biggest hurdle, moreso than the equipment, is getting the teenager (and yourself) mentally ready to let him operate that 2 ton piece of machinery. My folks flipped out on me. They bought the car, equipped it, and then refused to let me learn how to drive. To this day, I'm not sure why it happened like that, but I'm sure their fear and apprehension was a huge part of the equation. It's hard to let kids go, but even harder when that child has a disability. I remember being very afraid that I would be involved in an accident and end up in worse physical shape than I already am. I think CP has made me a very cautious, defensive driver. The independence that driving brings is so important. I would argue that learning to drive has a greater impact of the life of the disabled driver than it does on your average AB driver.

I think it's great that you are asking these sorts of questions now!

Nicki

[QUOTE=NJenn]Laurie,

I'm car shopping right now, and see a 2005 Impala in my future...

A car with hand controls can also be driven using the pedals. In fact, I insist that when other people drive my car that they use the pedals. Just because it's easy for me, doesn't mean that it's easier for someone else.

NJenn,

I have been really in need of a car too...I feel as I'm getting older I find it that I'm more anxious about driving (I'm 28)
My father insists that I get a "regular" car, as that he says my cp is so small that is not considered "handicapped." The only thing is, is that I'm a lefty and I feel my left foot is more "responsive" and it is better that I use it to drive. I guess everything is a matter of practice, however I really would feel more secure if the petal was on the left. Or maybe have them on the wheel...anyway, could you please tell me how I can go about looking into getting a license? How did you first learn to drive?

Like others have said, getting an evaluation done is the best way to know if he's going to need hand controls when the time comes. I haven't got my liscense yet, but I got an eval, and I don't need hand controls...so I've been driving with my dad and I hope to have my liscense in the next few months. :) I kinda want to try hand controls just to see what it's like. :D

Hope, I know how you feel. My right foot barely moves at all, and there was a time when I thought I wouldn't have been able to get my license because of it. But really, I just practiced a lot and got really comfortable with it while I had my permit, and it's never been a problem :)

... however I really would feel more secure if the petal was on the left.

Hope,

The is a device called a "left foot gas pedal" essentially it lets you drive with your left foot. Simple but effective. You can do a google search to see it in action.

Laurie,

I too commend you on planning ahead and looking into options to help your son become an independent adult.. Driving a car plays a huge role in living an independent life for anybody, and even moreso for a person with a mobility imparement.

It was my dad who convinced me to get my learner's permit at 16.. I'm 24 now and drive a car equipped with hand controls. I can drive with my feet as well if push came to shove but it would require much more effort. Why concentrate on the "mechanics" of driving when there are other solutions? Battling city traffic and finding parking is enough to think about!

F.S

Hope,

The is a device called a "left foot gas pedal" essentially it lets you drive with your left foot. Simple but effective. You can do a google search to see it in action.


F.S

F.S, Do you think it's hard to have put in? And does it requie extra care? Thanks!

F.S, Do you think it's hard to have put in? And does it requie extra care? Thanks!

Hope, I don't think it's very difficult to install. It looks like it's less work than installing a standard set of hand controls, and even that isn't that difficult.

The only extra care needed (and this applies to hand controls as well) is periodically oiling the moving parts. This is really simple and you can do it yourself. I usually do it on an as needed basis to eliminate squeeks. There's nothing more annoying than squeeky hand controls :)

FS

There's nothing more annoying than squeeky hand controls :)FS

I was just thinking this on my way to work this morning. Sqqqquuueeeekkkk as I break at the light.... :D FS, what brand of control do you have? I've been contemplating getting a temporary control to use for rentals, test driving, and driving other people's cars. Any insight on this? I anticipate traveling a lot in the next year, and have had not-so-good experiences with the hand controls on rental cars-- would rather bring my own. Now that I wear solid AFOs, driving with my feet is not really an option, not that it was the best idea in the first place.

My parents wanted me to learn to drive when I was 18. However, at the time I just didn't feel ready for it. Two years ago, at 27, I got my license. I drove about a month and then I stopped driving because of snow and ice.

Although I can drive a regular car with manual transmission (I have spastic diplegia and don't have dystonia), it is not an easy task at all, to say the least. I had to concentrate too much on smooth coordination of pedals, gear stick, traffic and all... So I decided to get a car with automatic transmission so that after 2 years I could drive again and maybe even enjoy it finally :)

Kat

I don't know..... I just don't think I'd ever want to rely on any of my CP affected muscles to ever save my life. And that's exactly what I'd be doing if I were to drive with regular pedals. Never can tell what they'll do under stress or when I'm fatigued. Hand controls are so effortless... I love to drive, and have driven all over the country by myself. That would never be possible if I were using these feet of mine. That alone makes the price and hassle of installation worth it!

Just got a phone call from the wheelchair place! I'm off to testdrive some new wheels! Yipee!!!!!!!!!!!!!!!!

Gee, thanks everyone! You just do not know how valuable your feedback is to me. This is totally one thing off my list. Sounds reasonably cheap and knowing that there is a temporary kit for for anyone and really, jsut seems like a huge part of living a 'typical' (ha ha - what is that?) life. I had in my head that it would be some hugely cost-prohibitive venture to have a car modified.

NJenn, I totally agree with your point.. even if he could drive with his feet, I would worry about the abitlity to have/make a split second motion to save your life or others lives. And who would want anythign more exhausting. Squeeking would be annoying. By the time Seth will drive, hopefully it will be perfected. :-)

Thanks again everyone!
Laurie

I was just thinking this on my way to work this morning. Sqqqquuueeeekkkk as I break at the light.... FS, what brand of control do you have? I've been contemplating getting a temporary control to use for rentals, test driving, and driving other people's cars. Any insight on this?

NJenn -

Maybe they're overdue for some WD40... Just be careful not to get any on the carpet. :) Hopefully you've fixed this problem since.

My hand controls are manufacured by MPD. (They actually come with this oiling tool that looks like a fountain pen... It'd be nice if I could find it. :rolleyes: ) They're the down for gas, forward for brake kind that you're probably familiar with... There are other types out there. I've seen one that's eliminates the downward motion althogether and gas and break are accomplished by push and pull. Supposedly this is a more ergonomic design but I have my doubts, it would definitely take some getting used to.

Although I don't have any first hand experience with portable controls, there are 2 types that I'm vaguely aware of..

The first type fastens to the steering column and adjust to reach the pedals.
I've heard that a common complaint with this type is that it's prone to some sliding back and fourth, esentially because there's nothing holding it in place at the top.

The other type that I know of is sold by a company called spokes n motion... Based in Colorado I believe. (I know of them because I've bought some adaptive ski equipment from them some years ago now).. Anyway this type of control looks sort of funky.. It's essentially 2 separate metal shafts (one for gas one for break) that attach directly to the pedals and you'd have to actually alternate between levers for gas and break... Again, I have no personal reviews but it looks pretty cumbersome.

I'd probably go with the first type if I had to choose but I wouldn't recommend it to those who have very limited movement in their feet... You'd need them if something failed to function according to spec. ;)

What experience do you have with controls on rental cars? I travel occasionally on business and I'd be nice not to have to use my own car all the time.. Maybe an Escalade or an Aviator for those long road trips, especially in the winter time would be nice. :)

F.S

FS-- I've seen those temp. hand controls with the two levers that you described. They made me a little nervous.

I've had two experiences with rental cars. The first involved a Monarch hand control (the type I drive with on my own car--down for gas, towards dash to brake) that wasn't calibrated properly. There was a lot of play in the control, and I couldn't "floor it" to pass on the highway without banging up my knee. The control literally felt like it would fall of the car.

The second was through no fault of the rental agency. The car they set me up with had a totally different control than the one I'm used to. It was that "ergonomic" control that you described. I can see why it's good, but since I didn't learn on it my brain couldn't wrap itself around the concept. I spent a lot of time driving in the parking lot before going out on the road, but I still had a few close calls!

While we're on the subject of wheels, I just ordered a new chair yesterday! TiLite ZRA with a pair of E-motion power assist wheels (gotta start saving those shoulder now!). We'll see if my HMO approves it-- not getting my hopes up.

I also use hand controls to drive, and have always felt safe and in control of the car. I can use my legs and do so to take my hand off the controls to change the radio, roll through the drive through, and stop at a light. When driving, i do prefer the HC. I also recommend a solid eval when the time comes, and don't listen to any product vendors. They will sell u anything.

Joe

I just got my permit not too long ago, and i was taking drivers ed. with the hand controls as well, they worked well and i was able to control the car comfortably enough for me and my instructor, so when it comes to budget, I'm getting the hand controls put on my own car... eventually ;)

Jame