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Independence through Hand Controls

  • By joannmaxwell

    It all started when my mother had a heart attack. The week before she had a bleeding ulcer and was also hospitalized. My niece came down from Ohio to see my mother in the hospital. We walked several times from the room to the cafeteria. I’m sure you’ve been to a hospital and know how far that might be! Without me present, she mentioned to my mother that I was walking poorly and I should have hand controls in my car. That started conversations within my family that I needed to get hand controls and needed them quickly.

    I’ve known that I would eventually need hand controls. But I got a little upset that all of a sudden my family was pressuring me. I know they only want the best for me and want me to be safe. I guess I just didn’t like the way the conversations started.

    One of my good MS friends (Who wrote the introduction to my book.) told me that I was being fearless to admit that I needed the hand controls. That really turned my attitude around! I refuse to let MS take one more thing from me! But I gained independence through the hand controls!

    This all happened at the beginning of July. I contacted several different organizations for an assessment, training, and installation. I learned that there was an occupational therapist driving instructor in my area. I made an appointment for assessment. I wasn’t able to schedule the assessment until the end of August. At that time it was determined that it was time for me to make the switch.

    I had my first driving training for hand controls a couple of weeks later. It was a little scary. Not only were we receiving a” toad strangler” of a rainstorm, my right hand and arm were having trouble with the knob on the steering wheel. (My left hand was operating the brake/accelerator mechanism.) We drove for over an hour and a half, and I got very fatigued. The occupational therapist who was my driving instructor was very concerned. She wondered if I would be able to drive at all.

    We tried a different knob configuration for my right hand and arm the next day. It was a disaster. Much harder than the first one we used. She stopped the driving lesson after five minutes. And told me that she would be writing a report to the DMV. I asked her if she thought they would pull my license after they saw that I was not successful with the training. She said they might.

    She also mentioned that there could be a right installation of the brake and accelerator mechanism instead of the left. At that point, my left hand, which has become my dominant hand now, would be on the steering wheel. She said that the dominant hand should be on the steering wheel.

    I called the company that would be doing the installation and the customer service representative told me that there shouldn’t be any additional cost. The more I thought about it the more I thought that was going to be best for me. Unfortunately, the local occupational therapist does not have a right installed brake and accelerator control. I emailed the customer service representative at the installation company to see if she might have something that we could use. They did not.

    So the closest certified driving instructor with the kind of controls I needed was in Greensboro. That’s about four hours away. I was fortunate to find out that the occupational therapist in Greensboro who was able to help me with the right handed hand controls, would be in Asheville soon. So she and I did some training. I was very glad I didn’t have to drive to Greensboro!

    In the meantime, I received a letter from DMV saying that they have approved my medical request for specialized equipment in the car. So I called them immediately and received an extension as I needed to practice with the new controls. The person that I talked to stated that I can get an extension with a recommendation from my doctor, which I did.
    I had some apprehension about the new configuration of hand controls, as I had already tried several different combinations. I had driven with my feet for 50 years, so my brain was struggling to figure out this new way. But, I had a wonderful session of driver training with the occupational driving instructor from Greensboro. We tried several configurations of a right-handed accelerator/brake. She even tried a left footed brake/accelerator. That was really bad. I’ve always known I’ve had loss of feeling in the bottom of my right foot. As I was trying to use the left foot I became very aware that my left foot also has lost feeling.

    There are several ways you can use a hand control for the car. You can push for the brake and pull for the accelerator. Or you can push for the brake and twist for the accelerator. Or you can push for the brake and pull back like a joystick for the accelerator. The one that has worked the best for me is the push and pull. And I can rest my arm on the middle console which helps to keep my fatigue under control.

    With my right hand using the hand control, my left hand, which is my strongest, then was on the steering wheel. We tried a less resistant steering wheel, but I was able to use the regular steering wheel with no problems.
    The next step was to get a new quote from the installation company. I have been very blessed to receive a promise of financial assistance from the Multiple Sclerosis Foundation, MS Bike the US and the National Multiple Sclerosis Society. As it happens the right controls are a little more expensive than left controls.

    After 50 years of driving, I finally received my learners permit! The hand controls were installed soon afterward. Then I connected with my first occupational therapist driver trainer so that she could indicate to the DMV that I was ready to take the test!

    My hope was that the local OT would say that I am roadworthy and ready to get my regular license. I’ve been practicing and practicing. I really have to pay attention especially when I go from reverse to drive or vice versa. Since my hand control is on the right side, and I push for the break and pull for the accelerator, it is a similar action of the gearshift. One time I thought I was moving the gearshift, but I was actually accelerating. It was actually pretty scary!
    I was scheduled to take my driving test to get approved to drive with hand controls at the DMV. However they canceled their appointments due to the snow. So I took it a few days later.

    The driving test consisted of driving on a state highway road, turning onto an artery, going into a quiet neighborhood and performing a three point turn and backing up. Then we drove back to the DMV office. The DMV officer said I did well and I passed! Yahoo!

    I really love the knob on the steering wheel. It is awesome! I understand it is outlawed for anyone who is not disabled. Too bad! I decided not to use the extension on the turn signal. Since I use my left hand on the steering wheel, it’s just as easy to use the regular turn signal. The extra mirrors really help! With two hands busy it’s hard to turn and look behind me. The right hand is on the piece of equipment that looks like a gearshift. I push forward for break and put back for acceleration. Then when I have to shift gears I use my left hand to change gears. I am feeling more and more confident every day!
    There is also an added bonus. Now that I’m driving with my hands, I can wear my ankle foot orthotic (AFO)! I couldn’t drive with it before. So I very rarely used it. Sometimes I would take it with me, park and put it on, go into a store, come out and take it off. So now I can have it on all the time. And I walk so much better with it!

    Even though it took six months, I’m very glad I went through with it. It’s amazing how small changes can make a big difference! And I can still drive independently!

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  • By Nancy W

    I give you credit for persevering in your quest to keep driving. Early in my MS journey, I got a left foot accelerator. I am so glad I did that. My right leg dragging is the first visible symptom when I overdo. It is good that I can still drive when that happens. My experience at DMV was not as smooth as yours. I had to try the test twice, the darn parallel parking got me the first time.

    For others considering a left foot accelerator, I found one on the internet that is removable without having to modify the car. It is heavy, weighing about 15 lbs but it means I can drive any car with an automatic transmission.

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    • By joannmaxwell

      Thank you Nancy for your reply! I have a guard that goes over the accelerator and brake, but it is also very heavy and very difficult to get out and put back in. So I just leave it out. I have to make sure that my right foot is not in the way that would interfere with the brake and accelerator. It seems to work really well.

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