Page 14 - Mobility Management, June/July 2020

ATP Series
The Land of the Quarter-Inch
new system when he explains how the patient is only able to functionally use their current system 80 percent of the time due to muscle fatigue or other issues.
“As a parent, you need to understand that there are fatiguing things that are happening, and they need to rest and relax,” Romero said. “But if I can install something that they can use 100 percent of the time because it’s allowing them to use two parts of their body instead of using one and only one, there are major differences in their independence.”
Almost every Duchenne patient Rotelli has worked with since her first in 1986 has been opposed to any change. Some have been very adamant about it, requiring extra time and patience to improve their mobility through a drive control or seating system they could accept.
Focusing on what the boy wants to do — change a TV channel, play Xbox, use their phone — and how a system can get him to that point is the most effective way of overcoming their initial frustration.
“If I can do this and you have four directions instead of two, then we have just quadrupled your output to play games and use computers and text on a phone,” Rotelli said. “That’s usually easier to get them to buy into than changing their mobility. Then I will say: I also believe this is an easier way for you to drive your chair.”
Reaching this patient population and transitioning them into the next phase of mobility solutions requires a willingness to listen and resist categorizing patients by diagnosis alone, Rotelli added.
“It’s their chair. It’s something they have to use and live in, and any change is going to be very, very hard,” Rotelli said. “You have to build a relationship with them, and once you do and have that trust, then they can tell you what they do and don’t like.” m
14 JUNE-JULY2020|MOBILITYMANAGEMENT
MobilityMgmt.com
Duchenne MD: Resources & References
1. Muscular Dystrophy Association
www.mda.org/disease/duchenne-muscular-dystrophy
2. Cure Duchenne
www.cureduchenne.org/about/what-is-duchenne/
3. Creating a Great ATP: Mobility Management article mobilitymgmt.com/articles/2020/03/01/great-atp.aspx
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