Sarah’s Story
Sarah talks about her experience with driving & multiple sclerosis. Read about the modifications Sarah made to her car to allow her to keep her independence.
It seems like a lifetime ago that I went through my MS diagnosis experience. Living with primary progressive MS (PPMS) for the past 15 years has made me into a warrior! The story I want to tell here is about one specific hardship in my MS journey – I had to stop driving. With support from the Elliot Lewis Center, I turned this low point into one of the most positive experiences of my life.
Dr. Lathi mentioned to me several times over the years that because of my progressive disability, I might become unsafe to drive. I tried my best to ignore her sound advice. I was in my 40s with a busy husband and teenager, and they needed me to drive. There should have been no denying the progressive weakness in my right leg and right foot drop as well as the weakness in my right hand and forearm. Oh man was I ever in denial about it.
One day in December 2019, I was driving on the highway to my routine clinic visit at ELC. Here is the part I’m not proud to say, but I want you to hear this if you are someone dealing with difficulty driving. I needed to use my arm to manually move my right leg from the brake pedal to the gas pedal. Horribly dangerous. The truth is that I was having nightmares about getting into a car accident. That day, Dr. Lathi told me what I did not want to hear but also secretly desperately wanted to hear. It was no longer safe for me to drive.
After that, I was quarantined before it was even popular! It’s shocking how depressed a person can become when unable to leave the house. It was hard to explain how I felt, but in March 2020, the pandemic caused everyone else to stay home, and all of a sudden, everyone understood how I had been feeling. The whole country came to a screeching halt.
Hear this now: disabled adults who own cars but can’t drive safely (and who don’t have access to reliable accessible public transportation) are withering away inside their homes. It does not have to be this way.
I initially pushed back on Dr. Lathi when she told me to investigate “hand and foot controls” for my car. She assured me that I could absolutely drive again. When I stopped feeling sorry for myself and started doing my research, I discovered that engineers and disabled adults have designed more than 50 ingenious configurations of hand/foot controls to meet many different needs. Disabled people who cannot use their feet and legs can absolutely drive safely.
The process for learning to drive with hand controls seemed daunting in the beginning, but looking back on it now, I can honestly say that it was fun. I worked with the Central Massachusetts Safety Council (CMSC) to investigate whether I qualified for these car modifications and learned which were best for me. It turns out that practically any old or new car can be retrofitted to make driving possible for a qualifying person who is physically disabled.
We experimented with different configurations in a CMSC car specifically retrofitted for this training. For me, the best option was a spinner knob grip placed at the 11:00 position on my steering wheel. The knob allows me to achieve the full turning radius of the wheel relying entirely on my strong left hand. An electronic left foot accelerator pedal was installed to the *left* (yes you read that correctly) of the brake pedal. My strong left foot can now do the work my right foot cannot. When I am using the left foot pedal, the right foot pedal that everyone normally uses was deactivated.
After we figured out the best hand and foot controls for me, I took six one-hour in-car classes with a superb CMSC teacher. My first lesson involved me having a near panic attack when asked to pull out of the driveway! By the time I had completed all the lessons, I had become a confident driver.
After I finished the driving classes, the next step was to take my driver’s license test at the RMV in the same CMSC car I learned to drive in. When I passed my driving test, my license indicated a new class that acknowledges my competency at using driver disability controls. Finally, I had my own car retrofitted at wonderful Mobility Works in Norwood, MA.
I cannot say enough good things about this entire process. Once my attitude adjusted, it was a positive experience throughout. It has been the blessing of my life to regain this level of independence and confidence. Thank you ELC for motivating me to go through this process and succeed!