Page 10 - Mobility Management, June/July 2020

ATP Series
CLIENTS WITH DUCHENNE MD OFTEN RESIST CHANGE. HERE’S HOW TO INTRODUCE SUCCESSFUL DRIVE CONTROL OPTIONS
BY HALEY SAMSEL
Ask clinicians or Assistive Technology Professionals (ATP) who have worked with boys with Duchenne muscular dystrophy (DMD), and they will likely tell you a similar story: This patient popula- tion is notoriously resistant to changes
in their mobility equipment, including driving controls and seating.
Behind that opposition is a complex condition caused by the failure of the X chromosome to make a necessary protein called dystrophin. DMD primarily presents itself in boys, who have one less X chromosome to work with than girls.
While boys with Duchenne often show signs of normal development in their first few years of life, their shoulders, upper arms, hips and thighs are typically the first muscles that are weakened by DMD, according to the Muscular Dystrophy Association1. The progressive nature of the disease leads most Duchenne patients to die in their mid-20s, with some men living until their mid-30s. This is a significantly
longer life expectancy compared to expectancies for prior generations of patients with Duchenne MD.
DMD patients will typically require a manual chair to travel long distances before moving to a power chair as they enter their teenage years. By the time they enter high school, Duchenne boys have been through years of assessments and are experiencing the realities of muscle fatigue and atrophy, as well as cardiac and respiratory issues.
During those teen years, many families have found mobility solutions that work for their kids. In turn, patients and parents alike are concerned that newer technolog- ical options and alternative driving controls may not give them the same results.
Lisa Rotelli, the Director of Adaptive Switch Laboratories, said that Duchenne boys are often misunderstood because they do not want to speak up for them- selves during an assessment, even if their current mobility system is uncomfortable or inefficient because they have been told what they need over and over again.
“This population is very near and dear to our hearts because I think they are misunderstood in many ways,” Rotelli said
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