Maximizing autonomy for DMD with the right technology combination
Duchenne Muscular Dystrophy (DMD) is a progressive disease. Gradually, people with DMD lose the ability to perform routine tasks like, for example, walking. In this story Hendrik – who has DMD and is part of MD Duchenne Team – explains how several special input devices maximize his autonomy. Discover how adjusted technology opens up new possibilities.
Enabling autonomy
Duchenne Muscular Dystrophy occurs in 1 out of 5000 (Center for Disease Control and Prevention) male newborns and is the most common hereditary disease. Often during childhood or teenage years, walking is no longer a possibility. This was also the case for Hendrik and marks his search for convenient technology to enhance quality of life.
In order to maintain the highest possible autonomy, Hendrik added a Kinova Jaco robotic arm to his Meyra Nema power wheelchair. It partly enables caregivers to focus on qualitative care. However, this did not give Hendrik the possibility to manage the arm and wheelchair himself.
Performing actions independently
Due to DMD, Hendriks' power is limited. This results in reduced movement capabilities. In order to, for example, actually pick-up objects with his robotic arm or adjust his wheelchair settings, he needed an additional device. After a product search, Hendrik ran into mo-vis. He now uses the Multi Switch combined with a proximity sensor.
Requiring no force or clicking, the proximity sensor helps him to perform different actions. Simply by holding his finger close to the sensor, Hendrik selects different options configured for the Multi Switch. Think of turning the wheelchair on and off, going through the modes of his chair and controlling his hand warmer. The fact that no force or clicking is required, is a great advantage compared to a regular mechanical switch, Hendrik adds.
Fighting stiffness and coldness
Hendrik easily wants to drive around his electric wheelchair, both in- and outdoors. Reduced finger flexibility and cold hands prevent him from doing this, especially when going outside. To go to my favorite places - like Allianz Arena – I now use a sensitive joystick and a Hand Warmer with dome, Hendrik explains. The joystick is ideal when finger power is limited and the hand warmers blows hot air onto his hands – which is retained by the dome.
Hendrik keeps fighting for awareness of DMD and his story illustrates very well how combining the right technology hugely improves quality of life. If you are in need of special input devices, we are happy to help.