In the years since that birthday, much has changed, including my relationship with driving. As an adult, I was diagnosed with myotonic dystrophy, a chronic progressive condition that causes muscle weakness, which influences my ability to drive. I still appreciate how much independence a car gives me, but driving now comes with a much greater sense of responsibility—toward myself, my loved ones, and the community.

For years I facilitated a support group for people with muscular dystrophy. I chaired a lot of discussions about driving and witnessed the anguish people felt—both patients and family members—about whether they were still safe behind the wheel. Patients feared losing their independence. Family members feared accidents and harm to their loved ones or others.

I Drive Shorter Distances

Now that my condition has progressed, I’ve found myself questioning my own safety behind the wheel—and taken steps to protect myself and others. As my upper body has become weaker and my fatigue has increased, I’ve started limiting my driving. I no longer drive from the East Bay, where I live, to San Francisco. The drive is too unpredictable. I never know when I’m going to get stuck in traffic or if I’m going to find a parking space at my destination.

I’ve Made Important Adjustments

I recently noticed that my grip on the wheel was weaker. To accommodate that, I bought a pair of tight-fitting leather driving gloves that ensure a firm hold. I also started avoiding highways and opting for side roads instead. And since driving at night makes me sleepy and less alert, I no longer drive after the sun goes down.

I Use Other Options

In bad weather or if I’m feeling particularly fatigued, I might have groceries and meals delivered or order a ride service. One day, I may even have access to a self-driving car. What a boon that will be for me and others whose disabilities preclude us from driving safely.

As you start to assess your own driving abilities, keep these considerations in mind.

• Drive less. If you’re often fatigued, even when you’ve had a reasonably good night’s sleep, consider limiting driving to short distances. If your muscles are weaker and your hand strength is affected, look for accessories, such as driving gloves, that will help.
• Consider vehicle modifications. Adaptive vehicles are available for people in wheelchairs, but you can make less dramatic changes to your vehicle, such as adding hand controls, pedal extensions, brake pedal guards, steering knobs, and high-tech electronic controls that will make driving easier. Make an appointment with a professional driver rehabilitation specialist to find out more.
• Get your vision tested. If it’s been a while since you’ve had your vision assessed, make an appointment with an optometrist or ophthalmologist. You might need a new eyeglass prescription.
• Test your driving skills. The American Automobile Association offers a self-test for seniors, but it makes sense to review the guide at any age.
• Be proactive. Find out what transportation options exist in your community. In addition to public transportation, some cities and counties have para-transit vehicles or free shuttles. Check with your family, friends, neighbors, and other community members to see if their schedules might coincide with your transportation needs. Also, see if ride services such as Uber and Lyft are available in your area. For more information, read 5 Ways to Access Affordable Transportation.
• Check in with your doctor. If you’re having doubts about your driving, mention them to your doctor. Some states have laws regarding driving restrictions for people with disabilities and certain disorders, which your doctor may be able to discuss with you. Based on your condition, your doctor may advise you when it is time to consider making modifications like I did, or even giving up driving altogether.
• Know when to stop. As I know from listening to many discussions about driving in my support group, it’s hard to admit that you might have to give up driving. But being in charge of that decision is better than having your license revoked because of unsafe driving or arguing with family members about it. Consider taking a driver re-evaluation program either through the AAA or at a local rehabilitation center to officially test your abilities. If your doctor prescribes the evaluation, insurance may cover the in-clinic portion of it. And if you’ve had any driving-related accidents, you may want to voluntarily retire your keys.

For more about how neurologic conditions affect driving, read The Keys to Safety. For specific information about driving after a diagnosis of epilepsy, read Ask Your Neurologist. 

Leslie Krongold, EdD, lives in Alameda, CA, where she leads support group meetings for the Myotonic Dystrophy Foundation. She also writes a blog and produces a podcast series called Glass Half Full.