Assistive Technology for Muscular Dystrophy

Instructor: April Gwen Ellsworth

April has a master's degree in psychology and has experience teaching special populations from preschoolers to adults.

Assistive technology helps individuals have greater independence and function at home, school, work, and in the community. In this lesson, we will learn about various forms of and resources for assistive technology for persons with muscular dystrophy.

Understanding Muscular Dystrophy

Muscular dystrophy is a condition that progressively weakens the muscles. Over time, the skeletal muscles that control movement degenerate, causing progressively weaker hands, arms, legs, and overall body strength. Some forms of muscular dystrophy (MD) also eventually affect the heart and other organs and systems of the body.

There are nine types of MD, differing in the rate at which the symptoms progress, age of onset, and inheritance factors. The most common is Duchenne MD, which primarily affects boys. Symptoms are usually noticed between ages 3-5, and the disease progresses quickly, resulting in most boys being unable to walk by age 12. In later years, a respirator may be needed to breathe.

Other forms of MD, including Becker MD, facioscapulohumeral MD, and myotonic MD, manifest themselves in late childhood, the teenage years, or adulthood. All are similar to Duchenne MD in their muscle weakening characteristics, but some forms are milder and others are accompanied by organ problems.

Assistive Technology

Regardless of the form of MD, assistive technology is available to help individuals live more independent and enriching lives, whether in the early or later stages of the disease. Assistive technology for muscular dystrophy refers to any device or adaptation that helps a person maintain their ability to function within their environment.

To determine the best type of assistive technology for a particular individual, the best strategy is for a team of people closest to the student or adult to conduct an assistive technology assessment. They will consider the person's needs, strengths, assistive technology options, and other factors. Additionally, since MD is a degenerative disease, ongoing changes in assistive technology will need to occur in order to continue to meet the person's needs over time.

Let's take a look at some the assistive technology options to consider:

  • Orthopedic braces and supports for the ankle and foot give support and help prevent tripping when picking up the feet becomes harder. A hand splint makes grabbing items like forks and hairbrushes easier as the thumb and wrist are supported. And slings for the neck and shoulders take pressure off of arm and shoulder muscles, while cervical collars support the neck so it's easier to hold up ones head.
  • Canes and walkers help with stability when mobility does not yet require a wheelchair.
  • Scooters are portable wheeled devices that allow a person with MD to get around quickly and easily while they still have considerable abilities in their arms and hands for controlling the scooter and sitting upright.
  • Wheelchairs provide a great deal of relief as well as independence for a person with muscular dystrophy. A manual wheelchair may be sufficient at first, while graduating to a power wheelchair provides greater mobility both indoors and outdoors. Power wheelchairs are controlled by a joystick, which can be so advanced that even a very light touch will operate it.
  • Standing frames help prevent the onset of scoliosis and allow a person with MD to take a break from the seated position of a wheelchair.
  • Voice activation on smartphones, tablets, laptops, and computers greatly enhance a person's ability to communicate with others, progress in school, and be productive in the work place. These devices can record lectures, take notes, access audio books, maneuver word processors to write papers and emails, navigate the Web, and more when dexterity and mobility of the hands and fingers is restricted. Additionally, screen readers convert text to audio so that Web pages and documents can be read regardless of the ability to move a mouse or navigate a keyboard with the hands.

Accessibility

Assistive technology incorporated into the environment also increases the autonomy of a person with muscular dystrophy. Wider doorways and ramps at home, for instance, allow for easy wheelchair access. Lifts help when transferring from the chair to bed, and wheelchair lifts give access to the whole house. Portable lifts are also designed for easier access to stairs at school, work, or in the community.

Additionally, by using a USB-UIRT device, many electronic items around the house can be operated by various means - whether the push of a button, voice, or infrared eyegaze. In other words, whatever assistive technology is used to operate ones wheelchair can also be used to manipulate the environment. Just like a TV remote, a USB-UIRT is programmed to control lights, fans, DVD players, coffee makers, and so on by using infrared signals. The same technology is also applied to iOS devices like an iPad and other environmental control devices.

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