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Fear - New Territory - Learning to Drive Again

Nov 10, 2009 08:35PM - 16 comments
Tags:

ms

,

driving with hand controls



I don't think of myself as a fearful person.  I always plowed headfirst into my studies, my profession and projects.  Straight out of internship I went right into the Indian Health Service.  There was no hesitation to moving to a rural town to be a solo pediatrician.

Now, I am feeling fear and am putting off something I need to do.

I am afraid to relearn to drive.

Now, I've been driving for 45 years - and pretty successfully.  But, the MS has taken away my ability to raise my right knee - which makes it darn hard to hit the brake!  So I haven't driven for most of the last year.  The solution was to have my car adapted with hand controls.  That got put off as we poured all of our money into finishing our basement so we could move down there and my 85 year old parent could live with us.

I found out this summer that my license had expired - who looks?  So off to the DMV we went.  Should have been simple.  Then they asked, "Do you have any condition that impairs your ability to drive safely?"  I was truthful.  The next thing I knew, I had no driver's license, just a state ID.  That felt weird and prompted us to finally haul my trusty '92 Camry over to have hand controls put on.  First I needed a letter from my physician.  Then it was back to the DMV to get a learner's permit.  That feels even weirder.  I can drive only with another licensed driver over 25.

They told me at the accessibility place that I either had to use the hand controls exclusively or nothing.  No mixing of sometimes hand and sometimes the foot.  My initial intention was to use only the hand brake and use the right foot for acceleration.  They said that was fine.

So, I began practicing.  I have a lever on the left side of the steering column.  To brake I push away from me with the left hand.  Pretty easy.  My left hand and arm is my strongest limb.  The accelerator is accessed by pressing downward on the same lever.  I had problems immediately.  I had trouble making full turns with my right hand on the wheel and the left hand on the brake.  I needed a turning knob.  They are illegal, but I have a doctor's note for hand controls.  So far, so good.

The knob made things ever so much better.  I could turn with just one hand/arm.  Then there was a new problem.  It seemed that while turning the car would leap forward.  The mechanic says that the computer controls on the car raises the idle speed during turns.  They could bypass that, but it would mean that I would need to sit and rev the engine with cold starts until the engine was warm.  Okay, I could do that.

Now I had a car that I could brake and turn and that didn't leap ahead like a galloping horse out of idle.  So I did some practicing.  Mostly around the neighborhood and to the grocery store.  Things didn't go as planned.  Turns out, though I can press my right foot down on the accelerator, I can't reliably know if I have pulled my toes up and off of it while I braked.  Several times, I was still rev'ving the engine while braking.  I learned that this gives unpredictable results.  There were some close calls in parking lots and a pounding heart.

So, I made the decision to operate the car with hand controls only and leave my right foot out of it.  Now, I am smart, aren't I?  And everything I have ever learned to do came easily, didn't it?  So why, was this such a problem?  Why, was managing to turn, brake, then accelerate all with the same hand control so hard to master?  Why did I find myself accelerating when braking was what I intended to do?  Stop.  Start.  Surge!  Stop.  I have lost confidence in my ability to get this down.  And, what about using the turn signals when the right hand is busy pressing down on the lever to keep the acceleration constant?  It's just beyond my finger tips.  The right hand is busy on the wheel.  How do people do this?  Are their muscles as tired as mine?

This is a big machine.  I could hurt people.  Deep down I know the statistics that people with MS have increased reflex times.  We do everything, even think, slower.  We have trouble with attention span.  I do and this was never a problem before MS.  I found myself dreading the practice and not doing it at all.  Something that would give me freedom and help my sister out - I should be really wanting to master this.  But what if I hurt someone?  This became real fear.

I had to get an extension on my upcoming driver's test.  Day after day I avoid getting into the driver's seat.

I went out today, in the rain.  As long as I held my attention together and did things a little extra slowly, I was all right...sort of.  Still, fine maneuvering is iffy.  Sometimes I would still accelerate instead of braking.  This is not a good thing.  I think of the elderly man plowing into the crowd in the LA Farmer's Market.  That could be me.

After about 20 minutes of driving, I find that turning is an effort.  My right arm is fatigueing.  It feels so hard to turn the car and keep it steady.  I don't feel in control.  I came home determined to try to strengthen my right arm.  Washing windows should do it, no?

This should be a matter of practice.  I know that.  I should do short periods of practice as often as I can.  That's what I plan to do.  I have to have this beast mastered by Thanksgiving - my driver's test is the previous day.  Deep down I am afraid.  Should I even be practicing?  Is this within my ability?

Deep down I am afraid.  Is this just caution or is this fear a form of wisdom?

Quix  

Comments
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by Lulu54, Nov 10, 2009 09:34PM
The litmus test here might be - would you put a loved one, particularly a child, in the same car with you driving and feel confident that you won't do any harm?  I'm so sorry that you have come to this cross road.  

Its got to be so tough to face this fear and decide what the right thing is to do.  

If you run out of windows, mine could use a spit shine too!

good luck in figuring out what the right choice is.
L



by rendean, Nov 10, 2009 10:38PM
I face a similar situation with driving in general. Since my vertigo issues and the change I've noted in how my brain processes information that invovle reflexes I have asked myself the same question...should I drive? The neuro has given me the go ahead based on how I'm handling sensory input on a given day. However, the last time I drove my son, he said I scared him with my driving. I'm not sure if it is a true issue or just the fact he has witnessed my decline in health and fears my actions in general.

As Laura said, the litmus test of putting a loved one in your car, is a good one. I feel confident of my skills but realize the facts and know the statistics as well. My driving, which I didn't due for over 2 months, was a loss of independance that I'm not ready to accept. Not that I want to harm anyone in any way but I want to drive that one mile to the grocery store and drive back home.  To add insult to injury, my PT gal has asked me on several visits if I drove myself there because she was going to have me call for a ride. On most of these days I already had a driver but not all of them. What did she see that I didn't?  That's what is haunting me but I didn't ask because I didn't want to hear the answer.

I do think your fear is wisdom. Wisdom and the oath you took to "First do no harm". You know your abilities better than anyone, take a long objective look using the litmus test.

On a practical level, there is a Shepard Spinal Center near me and it does driving evaluations and driver's ed.  Since it houses a MS Center I have seen many handicapped people using car modifications and use them well. I was also surprised at how "disabled" some of these folks looked when they parked their vans and rolled out in their wheelchairs. Granted most were probably not MS patients but I do know one in particular was.  Should she have been driving? I don't know. Is there anything similar to where you live?

I do wish you peace in coming to a decision. It is a tough one.

Ren

by Sarahsmom46, Nov 11, 2009 09:48AM
Being able to drive is a huge deal and makes life so much easier,  I've never been able to drive because of my low vision and can't relate to that ability other than in my dreams, but I can relate to the fear you have about going back to it with all the new bells and whistles you've added to the car.

I have a friend with low vision who got her driver's licesnse, a limited on, after age 35.  She said she started out with staying a comfort zone of a one mile radius, then gradually increased it.  She's been driving now for around 20 years and admits that she still has a little fear everytime she drives out of hre driveway.  And as much as she is happy to be able to drive to the grocery store or to a doctor's appointment or meet up with friends for lunch, she says she does not  enjoy driving. It's just a necessity.  

If you are eventually able to get the confidence and coordination to get back behind the wheel and drive to a point where you feel safe then great.  But if not, then you will find another option.  My bet is that you will overcome this fear much in the same way you have lived through so many other difficult and challenging experiences in the past.  You are a strong soul.

Julie

by ShadowsSister, Nov 11, 2009 10:48AM
Jeannie, I voluntarily gave up my driving in 1995, seems almost like yesterday. I did this because I no longer felt others were safe with me on their roads.

I used hand controls for many years from 1986 to 1995. It took me a while to get use to them, I started out in  a school parking lot, of course there was no school that day. This way I didn't have to worry about other cars, and this helped me to relax. It took about four to six weeks to feel safe enough to hit the open roads. I never had an accident.

When I stopped driving My electric chair became my car, it takes me every where I need to go, I hated this chair, until I needed it, now I am so blessed to have it....

Like every one has said, you'll figure this out, just like you have every thing else, so don't give up on you OK

. And please ease up a bit and relax...
{{{{{{~!~}}}}}  DJ

by Fluffysmom, Nov 11, 2009 07:01PM
Quix,

I think fear is your body's way of saying "this ain't easy!".   Its a natural response to a dangerous situation; a big change in "normal". Even if your thinking is slowed, your reflexes are slowed, you're still brighter and more alert than many of the yahoos i see driving out there daily.  You're also smart enough to know when you have to hang up the car keys, and won't let fear make that decision for you.

I like the idea of keeping practicing bit by bit, doing what you can.  You mentioned that you had built up leg strength; I would bet you could increase your arm strength. slowly.  You have the ability to make the decision whether you're up to driving on any given day; If you turn that first corner or three and your arm is weak or you can't sort all the different moves, then you can head for home.  I think that working for that license is a good idea.  I'm sure that you are able to recognize the cues from your body before you would become a danger.  You could pull over and rest if you're too far from home to make it there safely.

I didn't get my driver's license until I was well into my 20's, and remember all those fears you mention.  Granted, I was healthy and quick and sharp, and learned to drive well, though I still planned new trips carefully.  I drove through depression, pain, etc.  One day, a car in front of me stopped as a light turned yellow; I slammed on the brakes, slid on wet leaves, and scrunched the front of my car into the back of a heavy-duty jeep-type vehicle.  The fears reared up, I didn't drive much for a while.

I don't drive much now, and plan carefully when I have to; make sure I have plenty of sleep the night before, take Provigil, and give my driving my total attention.  I still have "cold sweat" moments when someone else's crazy driving or my own split-seconds distraction brings those fears up my throat.

So, jumping in fearlessly doesn't work any more  Isn't their a saying about courage not meaning that one is fearless, but that one feels the fear and goes on with what needs to be done?  I think there needs to be an MS version, that includes paying attention to the cues from our bodies while going on what needs to be done, and knowing when to put it off until we're truly able.

I have faith that you'll be getting your license, and intelligently choosing when and how far you're able to travel.  

Kathy

by michelleric, Nov 13, 2009 06:49AM
Hey Quix,

Just wondering how the driving is doing. Makes me think of the old joke: How do you get to Carnegie Hall? Practice, practice, practice!

Just thinking of you and hope you are progressing nicely with the driving. I am sure it is scary, but hopefully all the practice is eliminating some of your fear.

Michelle

by monotreme, Nov 13, 2009 11:04PM
Hi Quix.  Would you like to talk to my friend with MS who spent several months driving with hand controls?  Maybe she can give you some suggestions on how she conquered her fear and refined the skill.
Let me know.
Elaine

by shoshin, Nov 14, 2009 10:35AM
Quix,

I am in somewhat of a similar situation. I haven't driven since early September and am too afraid of hurting someone to take any chances. And yet it is so hard to have independence in this society if you can't drive and I know my husband is really tired of going to the grocery store (He doesn't really mind--he'll drive me wherever. He just isn't keen on grocery shopping and if he goes, we always buy more than I think we need).

In Indiana, apparently the dealers or mechanics are not supposed to install hand controls until you have passed a test and gotten an endorsement from the BMV (well, actually I got conflicting info from everyone I talked to, but it does seem like a good idea to be sure they'll work first). They didn't used to be so strict, but apparently there was a man who had just gotten hand controls and mistook the accelerator for the brake and pinned a little girl against the wall of a car wash and killed her. I don't think anyone wants to be responsible for such a tragedy.

There is an organization called the Associate for Driver Rehabilitation Specialists at http://www.driver-ed.org which has a directory of members. It might be worthwhile to see if there is someone in your area that you could consult with.

I am signed up for an evaluation which will hopefully be helpful in deciding whether the hand controls will work for me (I am a little worried as my left hand is weak and not very well coordinated). They will also provide driving lessons. It will be a little pricier (insurance apparently doesn't pay for a lot as they consider driving a luxury), but I think if I get through this I will have more confidence in my ability to drive successfully.

Wishing you success in making the wisest decision.

sho

by kelltx, Nov 16, 2009 10:51AM
Hi Quix,

A lesson learned the hard way...

I don't think there is any harm in going to take your driver's exam at all. That is what they are thee for to tell you whether or not you can drive safely, or not, and trust me even on your worst day they have driver's that have done poorer on their test before you. Once you have your license then it is up to you as to when you actually utilize that priveledge. I think from reading your post you would know better than anyone whether or not to get behind the wheel of a car. When I was a little girl I was paralyzed by fear: fear of the dark, fear of embarassment, fear of being alone, fear of my abusive father, fear of not being like, fear of not having a boyfriend  (<---really??? what was I thinking!). Until one day, when I was about 14 yrs old, my pastor preached a service on fear from a verse in 2 Timothy 1:7 (New King James Version),  "For God has not given us a spirit of fear, but of power and of love and of a sound mind.", shortly there after my Great-Aunt Frankie told me the old saying, "there's nothing to fear but fear itself."

My point being is that for the past few years I have forgotten those two pearls of real wisdom, and because of my fearfulness, I have basically sat in a recliner and withered away. I have a spinal cord Injury, and was a complete quad after my accident, but I worked hard, really hard, at PT & OT, and along with God 's blessing on my life, and within two years I had learned to walk again with assistance, and use my arms and hands,although I was limited I could find a way to do it all, and for the first few years I did, until all of my old fears started creeping in, and I started loosing the abilities I had worked so hard to get back. Now I am sitting here relegated to a chair, having lost most all of those abilities, and waiting for my doctor's to tell me whether or not I have MS, on top of my SCI, or if my cord injury has deteriorated, or maybe it has formed a seroma, or maybe the catheter lofged in my spinal column has formed a granuloma, whatever the diagnosis turns out to be, the symptoms remain the same...And i have lost those last few precious years when, had it not been for fear holding me back, I could walk, and use my hands and arms, even the muscles in my face are affected/afflicted now.

Boy, how I wish I hadn't let fear steal those years from me!

You'll know when you're having good days and when your having bad days, but if you let the fear of the unknown (or the maybe's and the might's) stop you. You will have lost a part of your independence...that you may not be able to get back.


Be safe & Be BLESSED, but go get your license!  And use it when & while you can!


by Guitar_grrrl, Nov 19, 2009 12:29PM
Hoo, must be scary in the rain!  Down here in Northern CA (and it's even worse in Southern CA) people just flat out forget how to drive!

Add learning your own controls to others' ineptitude...Yikes!

I'm so glad you're going for this, though.  Hang in there!

Cheers,
Lisa

by Quixotic1, Nov 25, 2009 05:53PM
Okay, guys.  We got all the adaptations on the car and the idle down-regulated so it doesn't feel like I'm breaking a new stallion.  I have been diligently practicing and my dad has been my licensed companion.  It's been good for the both of us.  Everything go teasier and easier and the driving got smoother and smoother.  But, my driving test was supposed to be this morning.  I had yet to get much practice backing up nor parallel parking.  I tried pp last night and failed miserably because the idle was too slow and it kept dying.

Yesterday I went to the DMV and tried to get my test postponed for the second time.  The supervisor got all snitty and said I was abusing the system and I could just wait for the next appointment time, but she wouldn't renew my permit.  I said that not being able to drive would defeat the purpose of having more time, and she basically said, 'tough."  So, I kept today's appointment.

My examiner was a sweet guy.  He was calm and funny.  I really wasn't nervous, but knew that backing and pp would be the rough areas.  I explained the hand controls to him and the problem with parallel parking.  He said to give it a go anyway.  I did well enough and we went on.  It all went well, but backing around a cureve wasn't a pretty sight.

I PASSED with room to spare.  Daddy and I treated ourselves to lunch and donuts.  Found a new fabulous donut shop.  they are few and far between here.

So, if any of you see a wild-eyed MSer backing up toward you, be afraid, BE VERY AFRAID!  And GET OUT OF THE WAY!

Just remember that two wrongs don't make a right, but three lefts do.

I am confident that I can drive well, even in a parking lot, when I am doing well.  When I feel crummy, nothing could get me behind the wheel anyway.  

Thanks for all your encouragement.  My fear seems silly now, but hey, I think it was the depression of all that I have lost to MS speaking.

Chapter closed,

Quix



by michelleric, Nov 25, 2009 08:21PM
((((((Quix)))))),

I am so happy and thrilled for your achievement today! You must be so proud of yourself. Thanks for making me smile today!

XO,

Michelle

by Lulu54, Nov 25, 2009 08:31PM
Yahoo!  Now you got your wheels back, you can go cruising on Saturday nights!

Or at least get yourself to appointments and the store if your family is busy.

This bit of independence may just do wonders for your spirits!

Congrats.
Lulu

Backing up around a curve?  Is that a special thing out there because of all your mountains and if you're on a one-lane road and a semi is comiing from the other direction that car has to yield?  We don't have that skill test here in the heartland.

by rendean, Nov 26, 2009 12:12AM
Quix,

CONGRATULATIONS!!!!  What a great achievement and lesson to us all to not be afraid of the unknown and to not let fear stand in our way.  However, I will heed your advice and not stand in the way of a wild-eyed MS driving my direction.

BTW, wanna race???

Ren

by PatHC, Nov 27, 2009 12:58AM
That's great news Quix, I have had my license restricted so that I can only drive certain vehicles and it's only for 3 years. So every 3 years I have to reapply and they talk to all the medics treating me and the decide if I am fit to drive!

I know myself if I am fit to drive, on bad days I don't even attempt it and after 13 years of commuting a 3 hour round trip to work every day I now only do very short drives for pleasure and a taxi gets me to work. That;s because here in the UK we have this great service called Access 2 Work which helps those with disabilities stay at work.  It has revolutionized my life as I had a period of over 6 months when I couldn't drive at all.

I felt this quite hard as I was 37 when I got my license and I did it just so that I could go back to University and get an education - the one I didn't get when I was young.

I was quite miffed about all this as 10 tears ago after a number of seizures, which we now know was my MS too, I was put on a restricted license. Last November I finally got my full license for life back after 9 years with no seizures, then 6 months later the MS dx took that away again.

So take it slowly, my friend, you will know when you feel able and it is just nice to know that your freedom to get yourself places is there if you need it. So many congratulations, I hope the doughnuts were yummy.

Hugs
Pat x

by Quixotic1, Nov 27, 2009 02:08AM
Pat, I have a restricted license also.  I must have a car with hand controls, a steering knob, bilateral external windows, and wear glasses and a pink tutu.

The donuts were awesome!

Q

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