By the time a teen living with Duchenne muscular dystrophy (DMD) reaches driving age, their physical independence is significantly limited. Reduced muscle strength and coordination combined with the high cost of an accessible car puts driving out of reach for many young adults with DMD — but not for all.
How DMD impacts the ability to drive
In DMD, the first muscles to deteriorate are those of the trunk or the proximal muscles. The progressive weakening of the skeletal muscles causes loss of strength and function in the shoulders, upper arms, hips and thighs, causing a loss of mobility. As DMD advances, the muscles of the heart and respiratory system are impacted, with symptoms such as fatigue, breathlessness, irregular heartbeats and heart failure.
As well as the wasting of muscles, DMD can cause progressive learning disabilities, cognitive impairment and behavioral disorders.
Read more about the prognosis of DMD
These physical and neurological consequences of DMD exclude many patients from ever driving. Others who are approved to drive decide later on that they don’t feel safe behind the wheel, and would rather be a passenger.
The first step towards a driver’s license is a medical evaluation. This will assess factors such as physical strength, coordination, reaction time, levels of fatigue and cognitive function. If approved to drive, patients can move forward with adapting a car and pursuing a license.
Adapting a car for driving with Duchenne
Thanks to new technologies, vehicles can increasingly be adapted to make driving possible for people living with DMD. Vehicle modifications can provide independence and freedom, but they are expensive and not available to all DMD patients.
Adaptations a vehicle might need include the following:
- Adapted electronic hand controls such as joysticks for braking, accelerating and steering.
- Voice-activated controls or touch pads for lights, windshield wipers, horn, heating, air conditioning and gears.
- Wheelchair-accessible vans where individuals enter the van via ramp and drive from their wheelchair.
These modifications are expensive: adapting a vehicle can cost up to $80,000. Funding may be available through special grants, nonprofit organizations, state vocational rehabilitation programs or crowdfunding.
As well as a vehicle modifications and specialized medical clearance, driving lessons on modified vehicles are a crucial step before a young adult with DMD can drive on their own.
Alternative transport
Driving with a disability is not for everyone. If driving is not possible for medical or financial reasons, or because it seems like a big responsibility, it is worth remembering that freedom of movement is still possible if you’re living with DMD. Independence can also be found in wheelchair-accessible taxis, rideshares and traveling with a caregiver.
Sign up here to get the latest news, perspectives, and information about DMD sent directly to your inbox. Registration is free and only takes a minute.
