Sunday, November 1, 2009

My MS Story Chapter 15 – Judy the Physical Therapist

In February of 2005 I developed a mysterious pain in my right shoulder, and I just couldn’t shake it. My doctor recommended that I see a physical therapist. Her people made an appointment for me with Judy. By a cosmic stroke of luck, Judy was also the rehab clinic’s MS specialist.

I told Judy about my sore shoulder, but frankly she could not have been less interested, and rightfully so. Here was a real, live MS patient in front of her- a patient at that critical juncture where walking was beginning to fail. Furthermore, I had never received the services of a physical therapist since my diagnosis. That meant that I was a physical therapy MS virgin, gift wrapped and left on her front doorstep. Judy tactfully explained to me that I had much bigger issues than a sore shoulder, and she was right. The shoulder pain soon cleared up on its own, and, well, I still have MS.

At one appointment Judy asked me if I had driven myself to the clinic. I sensed where she was going with this seemingly innocuous question. I was taken aback, maybe even a little insulted. I replied that I was fully independent, and of course I had driven myself to the appointment; thank you for asking. She pleasantly but firmly indicated that she was surprised, given how weak my legs were (speaking pleasantly but firmly is a required skill for a physical therapist).

After that session I began to pay closer attention to my driving. Holy crap! I was taking some serious shortcuts. Leisurely drives along the interstate were not the issue. The issue was with city driving, where I frequently had to move my right foot from gas to brake and back again. I was actually compensating by using my right hand to grab my pant leg just above the knee and assist my right leg in these brake-to-gas-to-brake transitions. I hadn't even realized I was doing it. Judy was right again.

As luck would have it, there are ways to drive a car without using your legs. The first step was to get hand control driving lessons, which Judy set up for me. It was a bit odd at first, but I got used to it. I simply needed to practice enough so that the connections in my brain that had previously traveled to my right leg for driving were rerouted to my left hand. After a couple of weeks it became automatic. The next step was to find a company who would install the hand controls into my two vehicles for me. I did find one, at $1,400 per vehicle, and no insurance help.

One day I received a letter from the State of Maine, indicating that I needed to take a driver's exam with my new hand controls in order to continue driving. Judy had forewarned me that an exam would be required, but I hadn’t really thought it all the way through. I was expecting to have it both ways. I was expecting to drive with my feet when they felt strong enough, and with my hands when they seemed like the best option (hand controls are set up so this is possible when others drive my car). Whose business was it anyway how I chose to drive?

It turns out that it was the State’s business. Once I started the process of acquiring hand controls there was no turning back. As far as the State was concerned I had to get my new license for hand controls and surrender my old license. These people were treating me like I was disabled or something. Come on.

I showed up at the Department of Motor Vehicles at the appointed time. I then sat down among the 16-year-olds and their parents to wait for my name to be called by an examiner. My parents did not accompany me.

Fortunately, this examiner was unlike the gentleman who failed me on my first try as a 15 year old. He seemed human, and quickly put me at ease. He was the special medical examiner. If you had suffered a stroke or had a limb amputated then you needed to demonstrate to this guy that you could still function adequately behind the wheel, in order to get your license back. Or, if you have a progressive disease and needed certain driving adaptations, like I did, then you had to pass muster with this guy.

The examiner shared a story with me as I drove around the streets of Portland, more deliberately than I had ever driven these streets before, or since. A few weeks earlier a person who had lost his license due to mental illness was taking the driver’s exam in order to get his license reinstated. The examiner asked the driver to parallel park. As everyone knows, this is easily the most stressful part of the driver’s exam. The driver struggled with the task and began arguing with himself in two different voices, as if the examiner was not even present.

“You idiot! Can’t you even park a car correctly?”

“Shut up. Leave me alone. You’re not helping things.”

“You big dummy. You are going to fail this test, aren’t you?”

“Shut up!”

And so on…

The mean spirited personality was right. The examiner was compelled to fail this driver. Breaking that news to somebody who had already been through hell and back (or not quite all the way back) was not fun. I guess, in the grand scheme of things, MS was not the worst driving handicap that I could have.

I passed my driving exam without any difficulty. For a while afterward I would still use my right foot to temporarily operate the brake or the gas pedal, usually if I had something else to do with one of my hands. But now I can’t remember the last time I touched a brake or gas pedal with my feet. In fact, since I was issued my special driver’s license I have not operated a vehicle unless it was equipped with hand controls (I learned that you can rent cars this way).

My advice to anyone who is indecisive about adaptive driving controls- don't be.  They will only make your driving easier and safer, and they don't take long to get used to.

Thanks, Judy, for helping me out so much back in 2005. You are the best. It’s probably time for me to come see you again. I’ve got a whole new set of issues for you to look at- you lucky girl, you.

Below is a quick hand controls tutorial.  Pictures were taken in my wheelchair accessible minivan. 


A: Primary control lever
    I push this lever forward for brake and down for gas

B: Right hand turning signal controller
    I need to be able to operate the blinkers with either hand, whichever is least busy at the time

C: Spinner knob
    Also referred to as the suicide ball. If you get in an accident you don’t want this to impale you. Allows me to easily operate steering wheel with one hand.

D: Horn

E: High/low beam switch

(click on photos to enlarge)

View from driver’s side door

Driver’s view

View showing the connections at the pedals.  Note that the connections do not interfere with normal operation of the brake and gas pedals.


  1. Hi Mitch,
    Good post, thanks.
    Came by to say hello and wish you a good Halloween weekend.

  2. Hello Mitch...

    Last winter I took a half-hourlong class in hand controls. It had me confused something terribly so I made up my mind once I got home not to bother with these stupid hand controls, and just continue along as I had been doing; lifting my right knee on occasion. Your post serves as a reminder that maybe it's time to try again and give it and myself a second chance. Thank you for sharing and recommending hand controls to those of us who really could benefit from the safety and peace of mind this technology affords.


  3. Herrad,

    Thanks for stopping by. Happy Halloween to you as well. What is this holiday like in Amsterdam?


    Hand controls can be very daunting at first, but I'm glad you're considering giving them another chance. I think you'll find after a couple of weeks that your brain becomes re-trained. It feels as natural for me now as driving with my feet ever did.

    But if my hands/arms keep getting weaker I'll need to drive with, I don't know, my nose?

  4. Sounds like you were lucky having Judy to steer you towards hand controls before things got any worse.

    You probably already know this, but one of the main reasons it's unwise to switch between using hand controls and conventional controls is that you don't want any split second brain reaction confusion in an emergency situation. If you suddenly have to brake to avoid a collision, you don't want your brain taking the time to decide whether we're using feet or hands today.

    If your hands and arms get weaker, but your mental processing and reaction time are still good, check out low/zero effort electronic controls - much more expensive than the mechanical controls you and I are using, but high level quads can and do drive.

  5. Katja,

    You are right. I was concerned about how I would react, split second wise, the first time I needed to. When the adrenaline hit me, would my left hand react like it should, or would my body go right back to old reliable (but actually quite unreliable) right foot? It went to my left hand, so I'm happy about that. The transformation is complete.

    I don't know if I'll go the joy stick route when I get to that point- will depend on the budget and my general attitude about driving. We're considering a condo in the city when I'm not able to drive anymore, so I can get places in my chair.

    Thanks for your comments.