Thanks to his new robotic arm, this teen has the support to achieve his goals.
Austin Stelly is only 14-years old, and he has Duchenne muscular dystrophy. The disease is a genetic disorder that over time causes degeneration of the muscles. Austin uses a motorized wheelchair full-time, and it has been his mode of movement for about four years. When Austin was ten years old, he lost his ability to walk and now he doesn’t have enough strength to lift his arms.
Still, Austin is hopeful that he could do the things that he has never done before. All thanks to the help of his new $2,500 robotic arm. The robotic arm works off the power of his wheelchair and Austin controls it with a remote.
Austin feels new freedom by being able to take a drink, brush his teeth, feed himself, and fix his hair. Yet, even with all this excitement, there is a dark cloud hanging over Austin and his family. The life expectancy of his disease is 20, and now Austin’s younger sister is showing symptoms of Duchenne muscular dystrophy.
Still, Austin and his family take things day by day as Austin plays on his computer and manipulates his awesome robotic arm.
The A-Gear Robotic Arm
Duchenne muscular dystrophy is a degenerative condition that affects the muscles of young boys, and to a smaller extent, girls, who eventually lose the ability to move their arms, are unable to walk, and at times are unable to breathe unassisted.
Developed in the Netherlands by research from the University of Twente’s MIRA research center and dubbed the A-Gear Robotic Arm, a prototype arm for a body-connected support aid is ready for testing. This prototype is worn under the clothing. It supports the independent operation of the arm during regular daily activities.
Researchers have been working on the robotic arm for the past four years. They have come up with two types of arm support; one a passive arm support controlled by the user – and the other is active support powered by motors and also controlled by the user.
Electrical or EMG muscle signals control the active arm support. The action comes from the user’s minimal arm strength. The arm movement mimics natural and intuitive movement.
According to Joan Lobo-Prat, a researcher at the MIRA research center for Biomedical Technology and Technical Medicine, researchers studied arm functionality of boys with Duchenne with and without A-Gear arm support. She states,“During the research, there were a number of participants who had been unable, and they were able to complete the tests set out in the tasks. The freedom of movement and the functionality of the arm increased when the subjects used the prototype. Also, the movements required less energy.”
Developers measured the arm function of patients of different ages. With this observation, researchers developed a prototype of how the human arm functions and changes throughout the disease and how to adjust the arm support over time.
The findings of the A-Gear project have provided new insights into how other supports could help those who lack movement in their limbs. Researchers studied how support aids work and paid attention to how they look. Reviews and tests are currently being carried out to determine the next steps to take the prototypes into production.
The Duchenne community campaigned researchers about developing a support using technology and engineering. A-Gear is only one project with the goal of improving lifestyles for those with Duchenne muscular dystrophy. Another aid is Flextension, which began in 2007. Both projects show promise.
What is Muscular Dystrophy?
Muscular dystrophy is a group of disorders causing the progressive loss of muscle mass and loss of strength. The primary forms of muscular dystrophy affect up to 1 in every 5,000 males.
Genetic mutations cause muscular dystrophy. These mutations interfere with the production of the muscle proteins that build and maintain healthy muscles. The causes of muscular dystrophy are genetic. If you have a family history of muscular dystrophy, there is a good chance that someone in your immediate family will contract the disease.
Duchenne muscular dystrophy affects young boys and to a lesser degree, girls, but there are other variations of the disease that can strike an adult.
There is no cure, but research is ongoing to discover medications and therapies that can improve symptoms and slow the progression of the disease.
Early symptoms of Duchenne muscular dystrophy are:
- Waddling gait
- Pain and stiffness in the muscles
- Walking on your toes
- Difficulty when running and jumping
- Trouble sitting up or standing
- Developing speech later in life than usual
- Frequents falls.
As the disease progresses, these symptoms are common:
- Inability to walk
- Shortening of tendons and muscles that further limit movement
- Breathing problems that eventually need a ventilator or some breathing assistance
- Curvature of the spine since muscles are not strong enough to support the spine’s structure
- Heart muscles can be weakened which leads to cardiac problems
- Difficulty swallowing including a risk of aspiration pneumonia. A feeding tube may be necessary at some point.
As previously mentioned, there is no cure for any type of muscular dystrophy. Medications and therapies help slow its progress and keep the patient moving for as long as possible, but the life expectancy of the disease is not good.
Medications that are commonly prescribed include corticosteroids whose job is to help strengthen the muscles and slow the disease's progression. However, long-term use of corticosteroids weaken the bones and may cause weight gain.
Heart medications are used if muscular dystrophy impacts the heart. Beta-blockers and angiotensin-converting enzyme or ACE inhibitor often help.
Physical therapy is helpful for muscular dystrophy. General exercises or range of motion and stretching exercises strengthen muscles for a period of time. Limbs often become fixed in one position and range of motion exercises will help muscles stay mobile longer.
Breathing assistance is often required. The muscles used for breathing become weaker, and breathing becomes more difficult.
Mobility aids, like braces and wheelchairs, help keep the person mobile and balanced. Braces are often used to keep muscles and tendons stretched and may slow shortening. Braces also give added support when moving.