All About Multiple Sclerosis

More MS news articles for June 2003

Behind the Wheel With Freedom at the Fingertips

June 17, 2003
By L. L. Desautels
The New York Times

Not long ago, I made a decision that up until that time was unthinkable: give up driving a car the traditional way. Multiple sclerosis has numbed my feet to the point where I can no longer tell without looking whether they are on the pedals, and my hip flexors are so weakened that naturally lifting my leg from gas to brake and back again is impossible.

For 25 years, driving had always been an enormous pleasure and privilege, and it was now fast becoming riddled with uncertainty, and potentially unsafe.

For many of us, driving, like countless other tasks we take for granted, is associated with personal freedom and a sense of control. What a thrill to be on the open road, windows down and your favorite song on the radio!

To try to reclaim some of what I had lost, I met with John Holcomb, a certified driving instructor with Adaptive Driving Program Inc. of Dedham, Mass., and began considering some hitherto unknown alternatives: hand controls, a "spinner knob," " training protocol," "certification procedures" and "license amendment." The concepts were so foreign to me that my first thought was of failure. Could I learn new tricks in my 40's? How does a person drive with his or her hands? Does it moderately resemble playing piano with one's teeth?

Surprisingly, I found, it was all indeed possible.

On the maiden voyage, training session No. 1, I was both excited and terrified. Mr. Holcomb was calm and supportive, but I noted that he had access to an emergency brake pedal all his own. I, on the other hand, would be using a lever on the left-hand side of the steering column that looked something like a directional lever. I felt moronic, repeating to myself, "Down for gas, push for brake," but at the time, this mantra got me through.

Mr. Holcomb was terrific at providing me with techniques for remembering the drill, like "Put your hand in a halt position, like traffic officers do," which is essentially the same motion for braking with the lever.

The trickiest part was the spinner knob, the round ball positioned at about two o'clock on the wheel and used for the steering. At first it struck me as counterintuitive, though in reality, the difficulty was simply in learning to drive without being able to have a free hand: when you drive this way, both are engaged most of the time.

Pulling timidly out of my driveway for the first time reminded me of being 16 again and practicing for my license with my dad in the old neighborhood. A sort of phantom foot reaction lingered only briefly, as I instinctively wanted to reach for the gas with my right foot. Once I remembered that I could not, I realized we were moving, and that it was really O.K.

Then the rush kicked in, and I was in charge. The impulse to shout out with glee or break into song was powerful. It would take several more lessons and a competency road test to have my license amended, and for me once again to regain my right to be free.

Mr. Holcomb, a member of the nonprofit Association for Driver Rehabilitation Specialists, considers himself among a special minority in the work force. "I get to work with highly motivated people who want to listen to me and learn what I have to teach them," he said. "How perfect is that?"

Earlier this year, the organization, established in 1977, had a total of 464 members, including 318 certified driver rehabilitation specialists, 298 from the United States and 20 from Canada, all working in support of people with disabilities and professionals working in the fields of driver education-training and transportation equipment modification.

The association's Web site, www, offers information on where to find driver training programs and equipment modification specialists in your area.

Once my training was complete, I had to outfit my own car. I was referred to Handicap Mobility Inc., of Norfolk, Mass., one of many companies that work with people to modify their vehicles and homes. Among their clients are people with every level of ability imaginable, including a generation of mindful baby boomers interested in home modifications for their aging parents, as the costs to do so can be more manageable than those of assisted living or nursing care centers.

John Zadroga, the company's president, describes the nature of his job as "giving the physically challenged new opportunities to regain independence."

The costs vary greatly. Installing a simple steering device and hand controls takes only a few hours and can cost roughly $1,000, depending on the age and make of the vehicle. The level and type of adaptive devices required can easily increase costs to several thousand dollars. For example, outfitting a van with a high-tech wheelchair lift and digital steering system would cost far more.

Many car manufacturers, including DaimlerChrysler, Ford, General Motors, Saturn, Volkswagen and Audi, offer rebate or reimbursement packages on new vehicles to assist disabled drivers with the initial costs. Depending on the nature and cause of the disability, some private health insurers, workers' compensation and other nonprofit associations may offer ways of providing financial assistance, so it is wise to investigate all private and public sources of financing, as well as the possibility of any income tax or veterans' exemptions.

The National Center for Statistics and Analysis, a division of the National Highway Traffic Safety Administration, reported last June that 510,000 people with disabilities nationwide used some sort of adaptive equipment with their motor vehicles.

The beauty of it, beyond having newfound freedom, has been crossing paths with those who are in the business of helping people to regain independence. These are the unsung, behind-the-scenes heroes who give us some of the most precious of gifts: the chance to become better drivers than we ever dreamed and the ability to once again to move through life with confidence.

Copyright © 2003, The New York Times Company